Bridging Clinical Care and Everyday Life: Insights on Quality of Life in Acute Myeloid Leukemia

Bridging Clinical Care and Everyday Life: Insights on Quality of Life in Acute Myeloid Leukemia | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Bridging Clinical Care and Everyday Life: Insights on Quality of Life in Acute Myeloid Leukemia Elisa Castellaccio, Samantha Nier, Giovanni Martinelli This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8212442/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract This qualitative study explores how Acute Myeloid Leukemia (AML) affects patients’ quality of life (QoL) across clinical, social, emotional, and existential dimensions. Based on 26 narrative interviews with patients in Italy, Germany, and Spain, and two Living Labs involving family caregivers and healthcare professionals, the research investigates how illness disrupts everyday life and how individuals negotiate vulnerability and normality. The findings reveal that QoL in AML is shaped by four key domains: (1) communication and trust in the doctor–patient relationship, which influence understanding, adherence, and emotional well-being; (2) the role of informal and social support networks, which provide essential practical and emotional assistance but also generate ambivalent burdens for caregivers; (3) the emotional and existential challenges related to fear, uncertainty, and identity redefinition; and (4) the economic and organizational implications of the care pathway. Across narratives, patients and caregivers appear as active co-producers of care, mobilizing personal, relational, and spiritual resources to preserve meaning and continuity in life. The study argues that improving QoL in AML requires integrating psycho-oncological care, empathetic communication, and formal support systems within treatment pathways, alongside policy measures recognizing the invisible labor of family caregivers. These insights contribute to advancing person- and family-centered approaches to quality of life in hematological care. Quality of Life (QoL) Acute Myeloid Leukemia (AML) Patient and Caregiver Experience Psycho-social Support INTRODUCTION Acute myeloid leukemia (AML) is a hematological malignancy originating in the bone marrow and characterized by its rapid progression, which justifies the term “acute.” It develops from immature hematopoietic stem cells (blasts) that, due to errors or mutations during the maturation process, undergo malignant transformation. In Europe, the estimated annual incidence is about 3–4 cases per 100,000 people, reaching up to 10 cases per 100,000 among individuals over 65, who represent nearly 70% of all cases (Visser, 2023; Saeed, 2025). AML is the most common form of leukemia in adults, with a higher prevalence in men and an incidence that increases with age. The 5-year survival rate in Europe is approximately 17–19%, significantly lower than for other myeloid neoplasms such as chronic myeloid leukemia (44%). Overall, about 43,000 new cases are diagnosed each year. The impact of AML on patients’ lives is profound, extending beyond clinical aspects to personal and social dimensions. Several studies (e.g., Pemberton-Whiteley et al., 2023 ; Buckley et al., 2018 ; Forsythe et al., 2019; Peipert et al., 2022 ; Salek et al., 2025 ) show that patients’ quality of life (QoL) is severely compromised, with difficulties in self-care, loss of autonomy, social isolation, and disruption of work and personal relationships, often accompanied by high levels of anxiety and depression. The consequences also extend to economic and logistical challenges, deeply affecting the daily lives of patients and their families (Oliva et al., 2025 ). Family caregivers experience an equally significant impact, sometimes greater than that of the patients themselves, particularly in acute rather than chronic forms of leukemia. The concept of QoL was introduced into medical literature as early as the 1960s (Elkinton, 1966 ; Spitzer, 1987 ). Its importance has grown over time with the advent of treatments capable of prolonging survival, sometimes at the expense of QoL, or conversely improving it without affecting life expectancy (Kaplan, 1982 ). Despite extensive research, no single definition of QoL exists. The World Health Organization (WHOQOL Group, 1995 ) defines it as “an individual’s perception of their position in life, in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns.” Many authors emphasize the difficulty of reaching a definitive definition (Brazier et al., 2014 ; Moons et al., 2006 ), proposing various approaches based on human needs, subjective well-being, expectations, or phenomenological perspectives (Ferrans, 1990 ; Bowling, 2005 ). The literature on well-being, closely related to QoL, further distinguishes between approaches focused on objective indicators, preference satisfaction, hedonism, prosperity, and life satisfaction (Peasgood, 2005). This has produced heterogeneous definitions, ranging from those that describe QoL as “a conscious cognitive judgment of life satisfaction” (Rejeski, 2001 ) to those highlighting its dependence on culture and value systems (Kuyken, 1995 ). Within this debate, the notion of health-related quality of life (HRQoL) has gained prominence, referring to the impact of disease and treatment on disability, daily functioning, and the ability to lead a life perceived as meaningful. More specifically, HRQoL has been defined as the value assigned to life duration, modified by impairments, functional states, perceptions, and opportunities influenced by disease, treatment, and health policies (Mayo, 2015 ). As a complex and multidimensional construct, QoL is therefore measured using diverse instruments that are not always directly comparable (Fayers & Machin, 2016 ). Building on this framework, the present study adopts a qualitative, narrative-based approach to explore the QoL of AML patients. Life stories allow us to capture the challenges of living with the disease and the meanings attributed to such experiences, identifying factors that positively and negatively influence QoL. Particular attention is devoted to the role of medical support, not only in clinical but also in social and existential terms, and its impact on quality of life. The study also includes the perspectives of family caregivers and healthcare professionals, thus enriching and broadening the interpretative framework. METHODS The study was conducted in two phases of data collection: in-depth narrative interviews and two Living Labs. A total of 26 interviews were carried out with patients diagnosed with AML across three European countries (9 in Italy, 10 in Germany, and 7 in Spain). Inclusion criteria required participants to be between 18 and 90 years old, have a confirmed diagnosis of AML, and the capacity to provide informed consent. All interviews were conducted in the native language of each country (Italian, German, and Spanish) to ensure participants’ full comprehension and comfort. As leader of the Work Package, we provided the interview guide in English, which was then independently translated by each national team. Once completed, the interviews were audio-recorded, transcribed verbatim in the original language, and subsequently translated into English before being shared with the coordinating team for cross-country analysis. The semi-structured interview guide was developed in collaboration with the Acute Leukemia Advocates Network (ALAN) and was inspired by validated quality-of-life assessment tools such as the Family Reported Outcome Measure (FROM-16; Golics et al., 2014 ) and the Haematological Malignancy Patient Reported Outcome (HM-PRO; Goswami et al., 2020 ). The questions explored multiple domains of daily life, including clinical and symptomatic aspects, treatment experiences, physical and psychological dimensions, social and relational factors, as well as economic and spiritual concerns. The sample ranged in age from 22 to 77 years (mean = 55), with a majority of women (17 women and 9 men). Most participants (n = 14) were in remission at the time of the interview, while eight had active disease and three were experiencing relapse. Detailed demographic information about the participants is provided in Table 1 . The analysis of the interviews was conducted using a qualitative content analysis approach. In a first stage, 32 thematic units were identified, corresponding to recurring elements and salient aspects that emerged from the narratives. Coding was carried out inductively, through an in-depth reading of the transcripts, with particular attention to features significant for understanding the illness experience. Subsequently, the identified units were grouped and refined at the conceptual level, resulting in seven overarching interpretive categories, here defined as “thematic core”. These categories provided a framework for a transversal interpretation of patients’ experiences, highlighting the main experiential turning points associated with acute myeloid leukemia. In addition, an online Living Lab was conducted with 13 Italian hematologists, coordinated by IRST, employing the Nominal Group Technique to explore physicians’ perceptions of what they considered to be the main needs of AML patients and to identify potential areas for improvement in care delivery and treatment pathways. Table 1 Overview of patients interviewed’s demographics. Each participant was assigned a pseudonym to ensure confidentiality while allowing cross-country comparison. The pseudonym consists of a randomly selected initial letter used for coding, followed by a two-letter country code (IT = Italy, GE = Germany, SP = Spain) and the participant’s age in years. Pseudonym Age Gender Status Nationality AML Diagnosis Occupation U_it69 69 M Divorced Italy Active, since Easter 2022 Metalworker / retired L_it77 77 F Divorced Italy Active, since 25.02.2022 Shirtmaker / retired B_it75 75 M Married Italy Active, since 2010 (in treatment since 2021) President, cooperative SCI A_it30 30 F Married Italy Relapsed, since 12.2022 Unemployed E_it69 69 M Married Italy Mid 2023. Active, in treatment Retired (yacht shipyard) I_it41 41 F Married Italy 27/11/2022. Remission. Transplant, maintenance therapy Unemployed C_it45 45 F Married Italy 03/09/2019. Remission, second transplant Unemployed N_it44 44 F Married Italy 07/2014. Recovered Unemployed at diagnosis (now works in a bank) Z_it56 56 M Married Italy 04/2024. Remission awaiting transplant Tiler R_ge71 71 M Married Germany 10/2020. Remission Self-employed worker L_ge36 36 F Single Germany 12/2017. Remission Self-employed L_ge33 33 F Married Germany 02/2021. Remission Unemployed E_ge75 75 M Married Germany 03/2021. Remission Retired R_ge52 52 F Married Germany 05/2016. Remission Worker R_ge66 66 F Married Germany 07/2021. Remission Retired V_ge28 28 F Single Germany 05/2023. Remission Unemployed N_ge49 49 F Divorced Germany 04/2022. Remission Civil servant D_ge48 48 F Married Germany 02/2022. Remission Pensioner with reduced earning capacity E_ge51 51 F Divorced Germany 12/2020. Remission Unemployed T_sp72 72 M — Spain 25/03/2024. Active Retired R_sp65 65 M Married Spain 06/2024. Active Retired V_sp70 70 F Married Spain 04/2024. Active Retired W_sp68 68 F Married Spain 02/2024. Remission Retired O_sp22 22 M Single Spain 04/04/2022. Relapsed Student G_sp67 67 F Divorced Spain 24/01/2025. Active Retired V_sp50 50 F Married Spain 01/2024. Relapsed On sick leave In parallel, a Living Lab was organized with family caregivers (n = 4), carried out with the support of AIL Forlì-Cesena 1 and conducted through the World Café Method, which has the benefit of allowing an informal and engaging discussion on the practical, emotional, and organizational challenges of caregiving. In addition, an online Living Lab was conducted with 13 Italian hematologists, coordinated by IRST, using the Nominal Group Technique to elicit physicians’ perspectives on what they perceived as the main needs of patients with AML and to identify potential areas for improvement in care delivery and treatment pathways (Mott et al., 2024 ). All materials collected (interviews and Living Labs) were subjected to content analysis through thematic coding procedures and cross-checking among researchers, in order to ensure methodological rigor and reliability of the findings. The study was conducted in accordance with national and European regulations on research ethics. Ethical approval was obtained from the Ethics Committee of IRST IRCCS, Meldola, Italy, and from the corresponding local ethics committees in Germany and Spain. All participants were informed about the objectives and procedures of the research and provided written informed consent before participation. Anonymity and confidentiality were ensured throughout the research process, and interview excerpts have been pseudonymized in the present article. RESULTS OF THE INTERVIEWS The analysis of the interviews revealed a complex and multifaceted picture of the lived experience of patients diagnosed with AML. Through the coding and subsequent conceptual grouping of the thematic units, seven overarching “thematic core” were identified. These core reflect the main experiential dimensions emerging from the narratives and capture how individuals make sense of their illness, navigate healthcare interactions, and reconfigure everyday life in the context of a life-threatening disease. Table 2 summarises these seven meaning thematic core, providing for each a brief description, the corresponding analytical units, and the number of codes associated with them. In the following sections, each nucleus is examined in depth and illustrated through selected narrative excerpts that exemplify the range and nuances of patients’ experiences. Table 2 Meaning cores. THEMATIC CORE UNITS OF ANALYSIS n° of codes 1. Clinical condition and symptomatology Diagnosis · Symptoms · Side effects · Physical changes due to illness · Covid-19 159 2. Care pathway and healthcare management Treatment and care · Issues related to disease management · Formal support for disease management 76 3. Information, communication, and doctor–patient relationship Communication · Relationship with doctors/trust · Negative events · Seeking information · Lay expertise · Advice 137 4. Emotional needs and psychological support Emotional/psychological needs/fears · Psychological support (formal) · Psychological support (family/friends) · Anger 132 5. Informal support networks and social relationships Informal support for disease management · Social relationships (friends) · Family relationships · Peer relations (patients) / peer support groups 93 6. Daily life, work, and finances Typical day/daily life · Work-related issues · Economic aspects 76 7. Existential, spiritual dimension and confrontation with death Spiritual aspects · Relationship with death · Outlook on the future 70 1. Clinical condition and symptomatology The experience of being diagnosed with acute myeloid leukemia (AML) and the onset of symptoms emerge in the accounts as sudden, often traumatic events that abruptly interrupt the ordinary course of life. These are moments characterized by disorientation, fear, and vulnerability. Sociological literature has widely discussed such experiences, interpreting them as biographical disruption (Bury, 1982), that is, a sudden fracture that forces individuals to redefine identities and existential trajectories. Other authors have spoken of disruption and existential disorientation (Williams, 2000 ; Charmaz, 1991 ), or of biographical work and the continuous effort of readjustment (Corbin & Strauss, 1987 ). In this context, the diagnosis of AML appears as a critical event (Turner, 1969 ) that redefines not only the body and health, but also the relational and social fabric of the person. The discovery of the disease can occur in different ways: through acute symptoms requiring immediate hospitalization, or more insidiously, with non-specific signals initially underestimated or attributed to other conditions (Global Leukemia Experience Survey 2023 Report, 2024) Surprise and disorientation at the time of diagnosis 24 patients describe the diagnosis as a real “shock,” an event that suddenly bursts in and upsets everyday life. For example: “In the morning at eight o’clock my son was talking with a doctor and I heard the word leukemia and… I remember I took it so badly that… leukemia for me was the same as death.” (U_it69) “When they told me that they would move me to hematology, I had already understood that it was not something simple, there was something seriously wrong, so I was already a little prepared.” (A_it30) “The diagnosis. When doctor said I had cancer, it was devastating.” (W_sp68) The diagnosis sometimes occurs after a long period of uncertainty, during which patients move between different doctors while experiencing vague and non-specific symptoms; in other cases, it comes suddenly, following an acute illness. As confirmed by the 2024 Global Leukemia Experience Survey, the time leading to diagnosis varies considerably. Overall, 62% of patients consulted a healthcare professional within three months of the first symptoms. However, those with chronic leukemia reported longer and more complex diagnostic journeys than patients with acute forms. Specifically, 27% of individuals with chronic lymphocytic leukemia and 24% with chronic myeloid leukemia waited more than six months before seeking medical attention, compared with only 2% of those with acute lymphoblastic leukemia and 4% with acute myeloid leukemia. Moreover, most patients (90%) who experienced symptoms prior to diagnosis were unaware that these could be signs of leukemia: “I had already been in hospital for three weeks at that point, I was given antibiotics and nothing got better. I then figured out for myself that it could be leukemia. My HB level was as high as 6.7 and the doctors still hadn't done anything. […] Then they did the bone marrow puncture the next day and in the afternoon a doctor or medical student from the oncology department came and told me that I had leukemia. I didn't have time to process this news because half an hour later I had to go back for drainage because of the fluid in my stomach. I was then transferred to the oncology department the next day.” (V_ge28) Non-specific, overlooked, or underestimated symptoms The initial symptoms of leukemia are often vague, non-specific, and easily attributed to other benign or transient conditions. Patients frequently report experiencing tiredness, muscle or bone pain, fever, pallor, recurrent infections, unexplained weight loss, shortness of breath, or general asthenia. As highlighted by the Global Leukemia Experience Survey 2023 (Picker, 2024), 82% of patients reported experiencing symptoms before receiving a diagnosis, yet 90% were unaware that these could indicate leukemia. Fatigue, fever or night sweats, and recurrent infections were among the most commonly reported symptoms, often overlooked or misinterpreted by both patients and healthcare professionals, contributing to delayed diagnosis and uncertainty during the pre-diagnostic phase. “The first symptoms, which absolutely did not suggest something so serious, were great fatigue, the need to sleep. […] Then one day I had this very large bruise on my leg, really very large, but it disappeared within a couple of days, so when I showed it they assumed it was an insect bite.” (I_it41) “I realized it because when I went up a flight of stairs, I was out of breath. I thought, well, I’ve been smoking tobacco all my life…” (E_it69) “Primarily tiredness and fatigue. Shortness of breath, skin rash and pallor. I had these symptoms one to two months before I saw a doctor.” (L_ge33) Some report a total absence of symptoms, with the diagnosis made by chance: “In this respect, my diagnosis was a purely accidental finding, I hadn't had any symptoms until then and my condition was detected very early. My doctor initially thought the lab had made a mistake and called me in again for a blood test.” (D_ge48) “Yes, I didn’t feel any symptoms at all, let’s say, because I usually do my full blood tests in March and April and until 2023 they were as precise as a Rolex, really precise, throughout the whole previous winter I hadn’t had a fever, nothing, nothing, no symptoms.” (Z_it56) Acute and severe symptomatology In other cases, the onset is more dramatic, with symptoms that severely compromise daily life and lead quickly to hospitalization: “For a year and a half I was no longer the usual me… but every now and then I complained. I started having symptoms I didn’t recognize, I really couldn’t stand on my feet. My legs hurt from a weakness that I can’t describe, I was constantly out of breath.” (U_it69) “I had all the usual symptoms, such as night sweats, weight loss, loss of appetite, extreme pallor. But what really started it for me was a bladder infection that couldn't be treated over a long period of time and only got better briefly when I took antibiotics. After that, I was fine at first, but when I stopped taking the tablets, it got worse again. At some point I was constantly vomiting and couldn't eat for weeks.” (V_ge28) “At some point, I could walk less and became tired quickly. Then, I developed large spots on my back. Examination at the dermatology clinic revealed that the spots were lymphocytes pushing out. I also always had a mild anemia. Later, I experienced severe abdominal pain.” (E_ge51) Emotional experience and reception of the diagnosis The emotional experience associated with the onset of symptoms and, above all, with the communication of the diagnosis is often characterized by shock, disbelief, and fear for one’s own survival and that of the family. Many described the feeling of “brain freeze”. “I was petrified… my wife was white as a sheet. In short, it was not a good moment. Afterwards, from there, they explained what we had to do.” (Z_it56) R_sp65: “Only when the doctor gave me the diagnosis, I was shocked, but for me, the only way to go on is without being the whole day thinking or worrying about it. I’m completely sure that it has been the worst moment.” N_it44: “The response was devastating, in the sense that the doctor told us, you are very lucky because you have a blood problem, now we need to understand the type of problem, but you are very lucky because nowadays hemato-oncology has made great progress, you would not have been so lucky if we had found something in the bones. Now it is a sentence that many times I still remember and repeat to myself, when something a bit unpleasant happens I say, well, in bad luck there is always a bit of good luck. After he told me that, I just said: look doctor, for me this is still a bad day, thank you.” The way in which the diagnosis is communicated and received also depends on the sensitivity of the healthcare staff and on the family and relational context in which it occurs. In addition to the fear for one’s survival, there are often anxieties about the future of loved ones, children, and family members: N_ge49: “My first thought was: my children, my parents, my animals. What will happen to them when I'm gone?” Physical and bodily changes The disease and treatments cause profound and often permanent changes in the perception of one’s own body: loss of strength, shortness of breath, tachycardia, chronic pain, weight changes, neuropathies. Body image and identity are redefined. U_it69: “Of course my life has changed… I also found myself not even able to walk 200 meters uphill because then I get tachycardia… so many things have changed.” D_ge48: “Due to the polyneuropathy and fatigue, I'm still in a performance slump. I also sweat all day… And that's despite the fact that I've been doing rehab sports for a year and have already done two rehabs. I'm not back to my old form yet and I don't know whether it will get better at some point.” E_ge51: “This diagnosis and treatment were very traumatic. I feel like I'm only now realizing what actually happened to me and how I have changed. …when you suddenly gain 10 kilos, have swellings, and a bald head, it's not easy for me as a woman.” Effects of the Covid-19 pandemic The pandemic overlapped with a condition of extreme immunological vulnerability, aggravating isolation, fear, and the organizational complexity of care. R_ge66: “Six weeks without seeing my husband; the doctors entered the room wearing double masks, no one else could come in.” C_it45: “I was immunosuppressed and there was the pandemic: I didn’t understand whether I was staying closed in because of Covid or because of the illness.” The “clinical condition and symptomatology” nucleus reveals how AML generates a profound biographical rupture, marked by uncertainty and vulnerability, with symptoms that are often ignored for timely diagnosis and consequences that impact every sphere of daily life. The body becomes the main “signaler” of the disease and treatments, forcing continuous negotiations between care needs and the desire for quality of life. The Covid-19 pandemic amplified, for many, pre-existing isolation and anxieties. The diagnosis of AML and its clinical course determine a sudden fracture in biographical continuity, generating an emotional burden made of fear, disorientation, a sense of loss, and the need for redefinition. On a daily level, the illness disrupts routines, relationships, and autonomy, imposing new dependencies, adaptations, and often social isolation. In the narratives, suffering and fatigue coexist with strategies of adaptation, search for meaning, and redefinition of priorities, signaling a continuous negotiation between vulnerability and the desire for normality. 2. Care pathway and management of the healthcare trajectory The treatment of AML is described as a complex experience that intertwines clinical, organizational, and logistical dimensions. Patients’ narratives portray a scenario of highly invasive therapies, frequent travel, and a daily life deeply conditioned by the disease. This demanding care pathway not only affects patients but also has a profound impact on family caregivers, who often assume a central role in coordinating appointments, managing daily care, and providing emotional and practical support. The burden of care, the unpredictability of the illness trajectory, and the constant adjustments required in everyday life contribute to significant physical and psychological strain within the family context. Within this pathway, not only challenges and difficulties emerge, but also strategies of adaptation, resources activated, and forms of support that enable patients and families to cope with the impact of AML. The therapeutic experience unfolds through different approaches—from standard chemotherapy to experimental therapies and stem cell transplantation—each involving significant side effects and frequent interruptions to everyday life. Alongside the clinical dimension, logistical and organizational aspects are equally critical: long distances from treatment centers, repeated trips, and economic burdens weighing heavily on patients and families. Formal supports (associations, AIL accommodation 2 facilities, home care) play a crucial role as indispensable resources for making treatment pathways sustainable and reducing the impact of the disease on both practical and existential levels. Therapeutic treatments and medical management Patients report undergoing different therapeutic approaches, ranging from standard chemotherapy to experimental therapies conducted within clinical trials, and stem cell transplantation.The therapy experience is often perceived as intense and invasive, with important side effects: A_it30 described the experimental therapy: “It consisted of pills I was already taking, plus seven days of subcutaneous injections, two a day for seven days, plus an infusion once a week for four weeks. I did not finish it because I developed a high fever; when the fever went down I started the second cycle and now tomorrow the third will begin.” “In hospital I stayed for a month, they gave me chemotherapy after a series of evaluations, and in my case they also gave me an alternative therapy to traditional chemotherapy, considering that I was still young, so they managed to preserve my fertility.” (N_it44) L_ge36: “I initially received chemotherapy. I had 99% blasts. The chemotherapy worked extremely well, bringing the blasts down to 0%, and then we proceeded with the bone marrow transplant.” These examples highlight how therapies entail significant interruptions to everyday life, requiring both physical and psychological adjustments. Challenges in healthcare management and logistics Managing the disease often implies logistical and economic difficulties (loss of income and/or increase of expenses): frequent travel, organizational challenges, and the burden of long distances from treatment centers. V_sp70: “I live an hour’s drive from the hospital, I have to get up at 6:00 to arrive on time for 8:00 appointments, and I end the day exhausted. I would like more economic and logistical support for those who live far away.” W_sp68: “We live 45 minutes from the hospital, and the only available ambulance sometimes forces us to wait up to five hours.” V_sp50: “I live two hours from here. In the morning they give me the blood test, I spend the morning here, and then I go to the doctor's office. When I come here my husband brings me, since I can’t drive. I have a two-hour drive, so the issue of petrol, parking, eating here, etc. are associated expenses, which make it difficult to access appointments. We schedule ourselves and come, and it is not an inconvenience, but the issue of associated expenses is an outlay. When you are discharged, they make you come every week, then every two weeks, and finally every month or two months. Now that I am admitted, my husband comes to see me, and it is the same: his food, petrol, etc.” Formal support received Formal support (housing facilities, home care, logistical transport services) emerges as a crucial element in facing the challenges of the disease, facilitating access to treatment and significantly improving the quality of life of patients and their families. I_it41 described the importance of AIL facilities: “So certainly the help from AIL was fundamental, because if we had also had to pay rent in XXX it would not have been possible. AIL gave us an apartment for three months post-transplant. We completely relied on them, they made a big difference.” C_it45: “AIL helped me with accommodation and travel. The hospital provides a shuttle to take patients from the station to the hospital, it is extremely important support.” N_it44: “I lived for months in the AIL house in XXX, where I had daily infusions in the day hospital. The fact of being free and not closed in the hospital completely changed my life.” Support in managing daily activities also comes through home care workers and home health services: L_ge36: “Yes. After the transplant, I had a household helper for six weeks. It was crucial because I have no family here. For me, it was clear that I couldn’t manage shopping and household chores alone.” R_ge66: “I am still 100% severely disabled. I was granted a care degree for the first four months. This meant that a mobile care service came to our home. They helped me with showering, housework and medication management. In the beginning, I had to take an incredible number of tablets – sometimes 13 in the morning and 13 in the evening, so I didn’t have the right perspective. They were immunosuppressants and things like that. After the four months, we hired a cleaning lady for a year. And of course my husband did a lot and helped me. When the rollator was gone, it was such a sign for me: You can have a normal life again.” In summary, the AML care pathway is marked by high clinical and organizational complexity, requiring continuous adaptation by patients and their families. Although therapies are essential, they profoundly affect daily life; logistical and economic difficulties amplify vulnerability. In this context, formal support and the relationship with healthcare staff become decisive resources for ensuring continuity of care and making the experience more sustainable. 3. Information, communication, and the physician–patient relationship The quality of communication between patients and healthcare professionals represents a crucial element in oncological and hematological pathways. Numerous studies have shown that informational clarity, empathy, and relational availability affect not only patients’ understanding of the disease and therapeutic adherence, but also psychological well-being and overall perception of quality of life (Epstein & Street, 2007 ; Bensing, 2000 ). In the case of AML, characterized by rapid progression and highly invasive treatments, communication takes on even greater importance: it is not limited to the transmission of clinical information, but becomes an ongoing relational process that helps patients make sense of their illness and cope with emotions such as fear, uncertainty, and disorientation. As highlighted by the Global Leukemia Experience Survey (Picker Institute Europe, 2024) and confirmed by Salek et al. (2024), patients with acute leukemia are among the most likely to experience fear of dying and relapse, emphasizing the need for supportive communication and access to psychological counselling throughout the care pathway. The narratives collected show that the relationship with physicians is not limited to a medical interaction, but takes the form of a space of trust and negotiation, where the way in which diagnoses, prognoses, and therapeutic options are communicated profoundly shapes patients’ experiences. In this perspective, communication is an integral part of care, and becomes decisive in fostering processes of adjustment and resilience. Communication of the diagnosis and disease progression The initial communication of the diagnosis often represents a moment of strong emotional impact. Patients emphasize the importance of the manner and sensitivity with which this news is delivered, as also highlighted by the Global Leukemia Experience Survey (Picker Institute Europe, 2024). Less than half of patients reported that their diagnosis was fully explained in a way they could understand, and only about half said they were told in a sensitive way. Moreover, older patients were more likely to receive the diagnosis alone, underscoring how the relational and emotional dimensions of communication are crucial in shaping the overall experience of the disease. I_it41 reported a traumatic communication: “The emergency room doctor looked at the test results and immediately gave me this sentence: ‘it is leukemia.’ It seemed a bit tactless to me; there is always also a human side that could be managed better.” V_ge28: “No, the information about this was inadequate. However, the long-term consequences are different for everyone. In terms of risk, my senior physician scared me a little.” R_ge66: “The doctor said that the immune system is like a dog that protects you; in my case, however, it was not responding well. She used simple words, unforgettable and very useful for helping me understand the situation.” These examples indicate how crucial it is to balance clarity of information with emotional sensitivity at the time of diagnosis. Information on treatments and side effects The adequacy of information about treatments, risks, and side effects represents another key point. Perceptions vary depending on the physician and the institution. The greatest difficulties were reported in interviews conducted in Germany and Spain, although in almost all cases the professionals who accompanied patients throughout therapy eventually established a relationship of trust. L_ge33: “As soon as I rang to say that I was feeling sick, someone immediately came with anti-nausea medication. There was a lot of attention to minimizing my discomfort.” L_ge36: “I remember that a doctor told me: ‘I don’t want to give you too much hope.’ This had a very strong impact on me.” V_ge28 recounted initially insufficient information: “The information about long-term effects was inadequate. A doctor told me shortly before the transplant: ‘With your rare mutation, mortality is high,’ without further explanation.” The communicative approach adopted by medical staff significantly influences patients’ ability to manage anxieties and expectations related to treatment, especially in the initial phase. Trust and relationship with healthcare staff The physician–patient relationship emerges as a central element for well-being and for the ability to face the illness. Trust in the treating physicians is often described as a fundamental pillar of the therapeutic pathway. The quality of communication and the human sensitivity of healthcare staff strongly affect the overall experience. C_it45 highlighted how the physician’s empathy changed her approach to the illness: “My doctor told me: ‘Don’t think only about leukemia, otherwise you stop living.’ Those words changed everything. Such a relationship makes the therapeutic pathway easier. In the hospital, empathy and trust are important, the human relationship I have with them is essential.” N_it44 described a relationship of great availability: “In the middle of the night my husband and I called Dr. XX, who called us back and reassured us, all during the night. So from a professional and human point of view I must say I received exceptional protection and competence.” L_ge36: “It was very well managed. The team came to see me about five times a day.” V_sp50: “Luckily I have met very good health professionals, and I am 100% happy with the clinical part.” These examples demonstrate how availability, empathy, and open communication contribute to creating a positive and supportive therapeutic environment. An empathetic and transparent relationship with healthcare staff is fundamental in the care pathway. Communication and involvement of family members Another important aspect concerns physicians’ ability to involve and properly inform patients’ family members / informal carers, recognizing their fundamental role in the care pathway: L_ge33: “Initially my husband was not involved, due to Covid he could not participate in the meetings. This was difficult because he was excluded from the information.” R_sp65 described the opposite situation, of full family inclusion: “The doctor was exceptional, she spent an hour with my husband and my wife answering all our questions.” In conclusion, the quality of communication and the trust established with healthcare professionals emerge as decisive factors in the AML therapeutic pathway. A relationship based on clarity, empathy, and availability not only supports adherence to treatment, but also contributes to generating a sense of safety and containment in situations of great vulnerability. As emphasized by Giddens ( 1990 ) and Luhmann ( 1979 ), trust constitutes an essential mechanism for reducing uncertainty and making complexity manageable: in the context of illness, it becomes an integral part of care itself. 4. Emotional needs and psychological support The experience of AML is not only a clinical condition but also an emotional and existential challenge that affects identity, relationships, and future plans. Anxiety, fear, and a sense of vulnerability often accompany patients throughout the therapeutic pathway, configuring what the literature defines as disruption or biographical rupture (Bury, 1982), namely a radical interruption of life continuity. In this framework, the need for psychological support emerges as a crucial and transversal dimension: not an accessory aspect, but an integral part of care (Holland & Weiss, 2010 ). The narratives collected show that emotional experiences fluctuate between fear of death, feelings of guilt toward family members, anxiety about relapse, and the desire for reassurance. At the same time, the value of support—both formal and informal—emerges as fundamental in containing distress and sustaining adaptation processes. Psycho-oncology, family closeness, and friendship networks represent decisive resources, though their accessibility and continuity are uneven. In this sense, the emotional experience of AML highlights the importance of stably integrating psychological support into treatment pathways, in line with international recommendations on person-centered cancer care (National Comprehensive Cancer Network, 2024). Fear, anxiety, and concerns for the future Patients frequently report strong fears related to the course of the disease, the uncertainty of the future, and the concrete possibility of not surviving: U_it69: “There were moments when I no longer believed, thinking: if Mihajlovic, Piero Angela, Berlusconi died, who had all the possible treatments, who am I to make it? This fear of dying devastated me psychologically.” V_ge28: “I saw myself walking hand in hand with cancer towards death. Only afterwards did I regain the strength to fight.” E_ge75t: “I felt despair and panic. Fear of dying. Fears about the future.” These examples underline how fear, anxiety, and uncertainty about the future are central to the emotional experience of illness. Emotional needs and the desire for reassurance Patients express the need for constant reassurance, emotional support, and responses to their psychological needs, often in relation to the family and medical environment: A_it30: “I would like to understand how to behave when I return home to my daughter, who has been away for a long time. This concern causes me anguish.” I_it41: “The huge difference for me was made by the nurses in XXX, they were always emotionally present. They gave me enormous strength, even just with a smile.” O_sp22: “Above all, I needed to talk about it with my family. Another thing I also needed is that not many people would know about it. Not because I was embarrassed or anything like that, but because there are people who call you and ask you questions, and the next day they call you again and ask the same questions, so you realize that many people don’t listen, and they don’t care about you, they care about making themselves look good.” These accounts highlight the importance of an emotionally supportive context, capable of responding to patients’ individual needs and vulnerabilities. Formal psychological support The psychological support received by patients mainly came from professional figures such as psycho-oncologists, but also from other professionals aiming to promote psychological well-being and emotional support. Some participants clearly emphasized the positive value of psycho-oncological support: L_ge36: “There was a psycho-oncology service at the clinic, which I have to praise very highly. Someone always came to see me and we were able to talk really well.” D_ge48: “And that was my salvation […] She came at least once a week, sometimes twice. I always took advantage of that and still do today.” E_ge51: “A psycho-oncologist was immediately assigned to me, who helped me a lot.” Some participants reported difficulties or inadequacy of the service in meeting their specific needs: L_ge33: “I tried that too, but it wasn’t a good fit for me […] Then there was the clinic’s pastoral care service, which was great.” R_ge66: “At first I tried to find a psycho-oncologist through the health insurance company. But that didn’t work out.” U_it69: “The psychologist told me after two sessions that she could not follow me, my problem was not the illness but the emotional devastation I carried inside. This left me without support.” Some participants complemented or replaced hospital-based support with alternative or associative approaches: R_ge66: “I then turned to an alternative practitioner who I had been seeing for Ayurvedic massage for many years.” N_it44 benefited from hospital psychological support on the advice of a trusted professional she already knew: “He told me: precisely because I know you, I know that you need someone who can explain what is happening to you in order to manage it.” V_sp50 preferred emotional support activities such as qi gong and online psychophysical group activities: “In my association we do not talk about the disease, we talk about emotions […] I have trained a lot in other aspects, such as chi kung.” Some patients chose not to use the service at all: C_it45: “No, it was offered to me (the psychologist) but I never managed to. Even during the first and second transplant, it was a figure I could not deal with.” Z_it56: “No, even if I think maybe I could have needed it, but I am a person who has always tried to manage things on my own.” What emerges is a complex picture in which formal psychological support is appreciated by many for its capacity for listening, reassurance, and guidance, but also shows clear limits in accessibility, subjective effectiveness, and integration with other therapeutic or associative approaches. Some patients choose to rely exclusively on their own internal resources or on alternative networks of psychological and emotional support. Informal psychological support Many patients identified family support as essential to coping with the illness, with the family often mentioned as the central figure: W_sp68 had extensive daily support: “My husband, and my two daughters. Also I have a very close friend, who helps me a lot. She offered me not only to bring me here to the hospital, but also to be with me during the day and also the night.” O_sp22: “Yes, the person I have talked to most about it is my mother. During the transplant admission, we spent a lot of time together without leaving the room.” L_ge33: “During therapy, I met a medical assistant who took care of me […] A true friendship developed from that. […] She was a huge support for me.” Some patients find great strength in spirituality and religion, which act as informal psychological support parallel to human relationships: D_ge48: “I’ve always had a positive attitude towards life. And of course faith plays a role. […] My mother and the whole church prayed.” R_ge66: “I am a great believer and even more so now. I’ve actually always had a voice inside me that told me: You have to get through this now, but you will make it!” Some participants emphasize the importance of emotional self-management and personal strategies: R_ge71: “I am incredibly inquisitive and curious. I try to challenge my mind […] That’s how I try to keep my brain in motion.” C_it45: “I’m trying to start talking about it less and less, because you can’t talk only about leukemia at home.” Despite informal support generally being seen positively, some critical aspects also emerge: E_ge51: “Sometimes I think, I’ll move to the north, buy a brick house somewhere by the sea, and want to know nothing from anyone.” V_sp50: “I have two daughters who don’t understand what is going on (9 and 14 years old).” Informal psychological support proves crucial for most patients, especially through close family members and trusted friends. This support includes concrete forms of daily help, intense emotional support, and spiritual encouragement. However, a dimension of psychological self-management also emerges, as well as evident limits when such support becomes excessively focused on the illness or insufficient to address deeper psychological needs, leading some patients to seek isolation or individual coping strategies. Emotional changes and personal redefinition The illness often leads to profound changes in the perception of self, priorities, and interpersonal relationships, triggering processes of redefinition and personal growth: N_it44 reflected on her emotional transformation after the illness: “I have become more selfish, if I want to do something now I do it without hesitation. I no longer want to waste time on things that don’t make me happy. This illness has changed me radically.” R_ge52 spoke about gaining personal strength: “The illness made me stronger. I learned that I can face a lot, that I don’t have to hide or always say yes to others.” E_ge51 described the complex acceptance of a new self: “Now there is a new me that I don’t know well. This creates a lot of fear because I no longer recognize my body, my identity.” These testimonies show that, beyond difficulties, the illness can open spaces for reflection and profound personal change. Emotional needs and psychological support emerge as essential elements in the experience of AML. Fear of death, anxiety about the future, and feelings of guilt toward family members are recurring themes that require adequate emotional responses. Although formal psychological support often proves lacking or discontinuous, informal support from family and healthcare staff is crucial. The illness triggers deep changes in self-perception and in the redefinition of personal priorities, underlining the need for targeted and continuous psychological interventions capable of accompanying patients through the complex pathway of emotional and biographical adaptation. 5. Informal support networks and social relationships Alongside clinical treatments and formal healthcare support, informal support networks constitute a fundamental pillar in the experience of patients with AML. Family members, friends, and broader social networks not only provide practical and logistical help but also represent a crucial emotional resource, capable of mitigating isolation and strengthening resilience. Sociological and psychological literature has highlighted how such ties significantly affect quality of life and processes of adaptation to illness (Thoits, 2011 ; Uchino, 2009 ). Informal support takes multiple forms: from the constant presence of family caregivers, to the practical help of friends, to the social recognition that helps maintain a sense of normality and biographical continuity. In this sense, oncological illness becomes a lens through which roles and relationships are redefined: some ties are strengthened, others weaken or are interrupted, generating an overall reorganization of social networks (Wellman & Wortley, 1990 ). The collected testimonies clearly show that the family is often the first point of reference, guaranteeing stability and emotional protection. At the same time, the friendship and community network helps to counteract loneliness and keep patients connected with their lives before the illness. However, critical aspects also emerge, such as feelings of guilt, pressing expectations, or social isolation, which demonstrate that informal support, while vital, is also traversed by ambivalences and tensions. Crucial role of the family in the care pathway The family frequently emerges as the first and main point of reference, providing indispensable practical and emotional support during the therapeutic pathway: U_it69: “My daughter is fundamental, she supported me even when I thought I didn’t want to undergo treatment. It is thanks to her that I found the strength to continue.” C_it45: “My husband has always been with me, he took days off work, accompanied me to the hospital every time, supporting me psychologically at every moment.” V_ge28: “My family helps me with this. My sister supports me very diligently, I have three sisters and a brother, and my older sister donated her stem cells to me. Of course, I have a completely different relationship with her now. She had a baby at the time and had to stop breastfeeding so that she could donate to me. And just the fact that she did that, that she put up with it to help me, is amazing. The bond with my family has generally become stronger.” The family represents an irreplaceable point of reference, playing a decisive role in ensuring stability and emotional security for patients. Support from friends and the social network In addition to family, friends and the wider social network often represent an important emotional and practical resource. Their support helps to counteract the social isolation generated by illness and therapies: I_it41: “My friends have always been close to me, even if physically distant due to my immune restrictions. They wrote to me every day, and when they could, they came to visit me while taking proper precautions. This meant a lot to me.” R_ge52: “My colleagues continuously sent me encouraging messages, they took care of my family when I couldn’t do it myself. Knowing that they were present, even from a distance, gave me incredible strength.” O_sp22 emphasized how the social network helps to reduce loneliness: “My friends made video calls to me every day so I wouldn’t feel alone. It was essential because in the hospital I was isolated and felt really sad and far from everything.” The support of friends is a vital resource for patients’ emotional and social well-being, helping them to maintain a connection with life before the illness. Difficulties and critical issues in social relationships Illness can also bring difficulties in social and family relationships, with conflictual dynamics or tensions related to the stress of the situation: U_it69 expressed feelings of guilt for the suffering caused to his family: “Sometimes I feel terribly guilty, I am making many people around me suffer, especially my daughter. It is not easy to handle these feelings.” G_sp67 described the emotional weight of family expectations: “My family was so worried that I almost felt obliged to always show optimism, even when I was feeling bad. It was very tiring psychologically.” R_ge52: “During my therapy, I felt like a stranger at home because I could see life out of the window. And I wasn’t allowed to participate. I wasn’t allowed to have any contact with anyone. Nobody was allowed to visit me. I was basically in a parallel world.” These critical aspects highlight how illness can generate stress and tensions in social and family relationships. Managing social isolation Health restrictions and immunological vulnerability force patients into isolation and significant social limitations, profoundly influencing daily life. In some cases, oncological illness frightens those who are close, leading to weakened ties. R_ge66: “Six weeks without seeing my husband, no visits allowed. Doctors entered the room wearing double masks. This isolation was psychologically very hard.” I_it41: “I am alone much more often. I cannot go to crowded indoor places, I no longer go to restaurants, I avoid almost every social activity that used to be part of my daily life.” R_ge71: “The illness has completely changed the relationship. On the one hand, friendships and family ties have become closer, but also the exact opposite. Friendships have dissolved or ended. And the same has also happened within the family. So, extremes in both directions.” These accounts highlight how isolation and health restrictions can negatively affect patients’ psychological and social well-being, increasing the sense of loneliness and frustration. Informal support networks represent a fundamental resource for AML patients, deeply influencing their ability to manage both emotionally and practically the therapeutic pathway. The family plays a central role, providing indispensable emotional and logistical support. At the same time, friends and the social network offer an important emotional and practical connection, mitigating the isolation induced by the illness. However, there are also critical issues linked to the burden of the illness on family and social relationships. It is evident that the effective management of informal relationships contributes significantly to improving patients’ quality of life and resilience. 6. Daily life, work, and economy AML affects not only the clinical dimension but also produces profound transformations in daily life, work relations, and the economic condition of patients and their families. The illness experience forces a redefinition of roles, habits, and priorities, imposing a continuous negotiation between physical limitations, care needs, and the desire for normality. As shown by numerous studies on chronic and oncological diseases, the loss of autonomy and the difficulty of maintaining stable work activities generate not only tangible economic impacts but also an identity and social crisis (Charmaz, 1991 ; Corbin & Strauss, 1987 ). The collected narratives highlight three main dimensions: radical changes in the management of daily activities and personal autonomy, the impact on career and professional identity, and finally, the economic difficulties connected to the indirect costs of illness. These closely intertwined dimensions contribute to defining the overall burden of AML on quality of life, showing how the illness transforms not only the body but also the social and material organization of existence. Radical changes in daily life and personal autonomy The illness and treatments strongly influence patients’ ability to carry out daily activities, generating loss of autonomy, chronic fatigue, and the need for continuous support: D_ge48: “After one hour of housework I have to stop, I am exhausted, sweaty and out of breath. I can no longer maintain the same autonomy as before.” E_ge51: “After being discharged from the hospital, my energy level was in the negative range, and I could barely manage my daily life.” C_it45: “I am a bit on stand-by, I don’t know how to explain it, I am a bit stuck. I even had difficulty picking up a book and reading it, when you lack the will to concentrate.” These examples show how AML imposes a substantial redefinition of daily life, limiting personal autonomy and forcing patients to continuously negotiate with their physical abilities. Impact on work and professional identity Work emerges as an area strongly compromised by illness, generating economic difficulties, loss of professional role, and a sense of identity precariousness. However, most of the interviewees were already retired at the time of diagnosis. I_it41: “I used sick leave as long as I could, then the illness allowance ended and so I could take extraordinary unpaid leave, but then we had disagreements with my employers about promises that were not kept and so I preferred to resign.” C_it45: “No, I stopped working altogether. Also because when I was doing the monthly maintenance chemo, I couldn’t go back to work, I had frequent problems with infections like bronchitis and pneumonia.” Economic difficulties related to illness Illness often introduces new economic challenges, mainly due to indirect costs (since national healthcare systems generally provide patients with all drugs and therapies free of charge): travel, reduction or loss of work income. V_sp70: “We have much more expenses, since my husband eats every day and every meal in the hospital’s cafeteria. Also, every time we are coming here from her town, we spend a lot of money.” C_it45: “Even if the treatment is covered, there are significant additional expenses. AIL helped us with accommodation, but there are still daily, travel, and transport expenses that are considerable.” V_ge28: “Financially, it’s a complete challenge, even just the doctor’s appointments. They are difficult for me to attend. I can never get there on my own, it’s very exhausting for me. So I have to take a cab. I like driving, but I don’t have the confidence to do it on my own. I lack concentration and stamina. You have to keep track of all this medication and you have a lot of paperwork to do. The costs involved are sometimes really unimaginable. You don’t expect that. I never thought I would get cancer at 27.” These testimonies underline how the economic aspect represents an additional source of stress, further aggravating the complexity of illness and influencing patients’ ability to cope serenely with the therapeutic pathway. AML deeply affects daily life, work activity, and the economic condition of patients. Physical changes and chronic fatigue strongly limit autonomy, making even the simplest daily activities difficult. The loss or suspension of work activity generates not only concrete economic problems but also a significant psychological impact on the perception of one’s identity and social usefulness. Despite these difficulties, there also emerges a capacity for adaptation and personal redefinition, which allows patients to establish new balances, new priorities, and to develop effective coping strategies. 7. Existential, spiritual dimension and confrontation with death AML does not only affect the body but also deeply impacts the existential dimension of those affected. The sudden irruption of the disease and the constant threat of death generate what Frank ( 1995 ) defines as an illness narrative capable of disrupting the consolidated meanings of existence and imposing a redefinition of life’s sense. The confrontation with one’s own mortality represents a traumatic passage, often experienced as a “biographical limit” that forces the re-elaboration of priorities, relationships, and identity (Becker, 1973 ). The collected testimonies show how the diagnosis of AML inevitably opens up radical questions about living and dying, giving voice to deep fears, feelings of anguish, and perceptions of precariousness. Alongside this experience of vulnerability, however, inner and spiritual resources also emerge: for some, religion or faith; for others, meditative, philosophical, or introspective practices that offer support and possibilities for resilience. In this sense, illness is configured not only as a crisis but also as an opportunity for transformation, in which patients re-elaborate the boundaries of their identity and rediscover new existential meanings. Direct confrontation with death and fear of the end The diagnosis of AML immediately brings patients into a direct and often traumatic confrontation with the possibility of death, generating profound feelings of fear and anguish: R_ge66: “I think death has become more real. In the past, people tended to try to push the topic away or not think about it. Because it was still so far away. That’s different now. In March, my mother-in-law died at over 90 and a neighbor at well over 80. That really hit me hard. I thought: that could have been me too.” B_it75: “I just hope that when it comes it doesn’t make me suffer too much. Maybe if one falls asleep and doesn’t wake up, that would be the best thing of all.” O_sp22: “I am worried about dying. My hair falling out, getting thinner, all that doesn’t worry me, because I see that it’s reversible, but dying does worry me. Not depression, maybe anxiety, and sometimes I feel unhappy. When the lights go out in the hospital and everything goes quiet, my head spins.” These examples underline how the immediate confrontation with mortality represents a profound and inevitable emotional shock, marking patients’ existential journey. Spirituality and inner resources The spiritual dimension emerges as a significant resource for some patients, who find support and comfort in spiritual or religious practices, while others develop alternative inner resources: L_ge36: “Yes, I am totally spiritual, especially during the illness and in my healing phase. I meditated every day, did a lot of yoga, and I delved deep into finding an answer for why I became ill and why, especially, a second time. I found many answers for myself. It strengthened or intensified me. I am not religious, nor did I grow up religious. But I strongly believe that the universe is a higher power, that the sun conveys a lot of strength and energy, and that everything happens as it must be.” G_sp67: “About myself. I am very spiritual. That is why I have an inner strength. Spiritual strength is related to people and feelings. I love the people around me, and I usually show it to them.” V_sp50: “I meditate a lot, and I do a lot of self-inquiry, and I always try to look forward. Let them out and try to relax. Chi kung is very relaxing, and that helps control emotions. I feel good (I have felt good throughout the process), and I think that in part it is because I work hard on my emotions.” Spirituality, understood in a broad sense, can represent a fundamental resource for facing the emotional and existential difficulties related to illness. Acceptance, resilience, and realistic confrontation with death In the course of the illness, some patients develop a progressive acceptance of the reality of the disease and the possibility of death, accompanied by coping strategies that allow them to face the future with greater serenity: C_it45: “After the first very hard blow, I understood that I had to move forward. I stopped crying, I accepted that the illness was part of my life and I decided to face it.” L_ge33: “Well, I have to say, sometimes I find it difficult. It’s particularly difficult mentally because my life plan was different and everything has changed as a result of the illness. And I still go to psychotherapy regularly. I’m also working on all these issues, but I had really hoped that after two years, after the end of therapy, I would have noticed significant improvements.” Z_it56: “I still tried a bit to joke with my family, to play it down, but now fortunately I managed to get into the mindset of what I have to do.” The existential and spiritual dimension and the direct confrontation with death represent a central aspect of the experience of patients with AML. The traumatic impact of the diagnosis leads to a profound existential crisis, characterized by fear and anguish about one’s mortality. However, over time, many patients process this confrontation by developing new personal awareness, redefining their priorities, and discovering unexpected spiritual and inner resources. These processes often lead to a significant identity transformation, where the meaning of life and death is radically and profoundly redefined. The ability to develop resilience and to find alternative meanings represents a crucial element for positively facing the therapeutic pathway, underlining the importance of specific and targeted psychological and existential support, capable of accompanying patients in these delicate personal transitions. Results of the Living Labs with family caregivers In the Living Lab dedicated to caregivers, conducted through the World Café Method, the discussions brought out a set of central dimensions of the care experience. A first theme concerns daily practices and the organization of care work: caregivers take on a role that goes far beyond occasional support, amounting to an ongoing responsibility that involves planning, constant monitoring, and management of therapies, with characteristics comparable to those of a real job. This resonates with recent findings from a global study on leukemia caregiving (Oliva et al., 2025 ), where 90% of family members reported providing emotional support and over 80% were involved in daily practical tasks such as transportation, household chores, and financial management. These results confirm that leukemia caregiving constitutes an all-encompassing, time-intensive activity that requires continuous coordination and adaptation. A second aspect concerns the relationship with healthcare professionals. The doctor–patient relationship is perceived as being based on trust and esteem, to the point that caregivers tend to delegate a significant part of therapeutic decisions to hematologists, recognizing both the quality of clinical care and the value of relational support. At the same time, the caregiving experience is characterized by a strong emotional investment. Caregivers report experiencing continuous emotional labor aimed at supporting the patient in moments of vulnerability, mediating family tensions, and maintaining an affective balance in a context marked by the uncertainty of illness. Consistently, Oliva et al. ( 2025 ) highlight that caregivers of AML patients experience the highest psychological burden among leukemia subtypes, with significantly elevated scores in emotional-behavioral domains (EB = 19.7 ± 16.6), confirming that emotional distress and fatigue are pervasive. The need to care for a family member also entails a profound reorganization of daily and working life. Schedules, priorities, and personal spaces are redefined, with direct impacts on the professional sphere and the management of leisure time, sometimes mitigated by access to legal instruments such as work leave. These results align with the same study, which reports that one-third of caregivers (34%) had to reduce working hours or leave employment, and nearly half (48%) experienced financial strain due to care responsibilities. The psychological impact is another critical element. Anxiety, guilt, constant worry, and reduced subjective well-being emerge as recurring consequences of the diagnosis and therapeutic pathway. The patient–caregiver relationship proves to be ambivalent: while mutual protection and solidarity prevail on the one hand, on the other, difficulties in communicating needs and emotions are recorded, which can generate tensions and misunderstandings. Illness also acts as a factor in restructuring family ties, reactivating pre-existing dynamics and imposing a redefinition of roles. Finally, logistical and economic difficulties—related to transportation, waiting times, and indirect costs—constitute an additional aggravating factor of the caregiving burden. Overall, the results show how the caregiving experience in the onco-hematological field is configured as a complex interweaving of material work, emotional commitment, biographical redefinition, and relational restructuring, with significant repercussions on the caregivers’ quality of life. This multidimensional burden, as shown in Oliva et al. ( 2025 ), calls for integrated psychosocial and organizational support strategies that address the needs of both patients and caregivers throughout the disease trajectory. In the Living Lab with healthcare professionals, conducted through the Nominal Group Technique, the physicians’ perspective on the needs of patients with AML and their caregivers was explored, as well as on the critical issues and potential of the therapeutic pathway, including experimental therapies. Results of the Living Labs with medical experts Professionals emphasized the value of clear and empathetic communication, considered crucial to ensuring understanding, adherence, and active patient involvement. The literature confirms that effective communication improves the perceived quality of care and the therapeutic alliance, reducing anxiety and uncertainty (Epstein & Street, 2007 ; Butow et al., 2012 ). The importance of preserving social ties with family and friends was also highlighted, recognized as a fundamental safeguard of psychological well-being (Northouse et al., 2012 ). Doctors recognize their role not only as care specialists but also as psychological points of reference, entrusted with the confidence of patients and families. In line with previous studies, the value of including patients in therapeutic decisions was reiterated, promoting models of shared decision-making that strengthen autonomy and agency (Elwyn et al., 2012 ). In the home care context, the need to maintain a constant flow of communication with healthcare facilities was reported, along with a growing need for reassurance—factors that the literature identifies as central in the management of chronic oncological diseases (Street et al., 2009 ). An important theme concerned experimental therapies, perceived as innovative tools but often presented as a “last resort.” The complexity of these therapeutic options makes a high level of trust and accurate communication indispensable, elements that recent studies highlight as particularly delicate in oncological clinical trials (Joffe et al., 2017 ). Finally, physicians reflected on the needs of caregivers, often seeking practical, logistical, and bureaucratic information to navigate care pathways. The fundamental role of community services was emphasized, while also acknowledging their high regional heterogeneity. Among the critical issues, difficulties in accessing certain forms of intermediate care, such as physiotherapy, emerged, where the presence of an oncological diagnosis continues to represent a factor of exclusion or resistance, confirming the stigma that still accompanies oncological illness (Else-Quest & Jackson, 2014 ). DISCUSSION This study shows that the quality of life (QoL) of patients with AML cannot be reduced to a clinical or symptomatic dimension, but rather represents a multidimensional construct that integrates physical, psychological, relational, social, and economic aspects. Consistent with the literature on HRQoL (WHOQOL Group, 1995 ; Fayers & Machin, 2016 ; Haraldstad et al., 2019 ), our findings highlight how the diagnosis and treatment of AML constitute a form of biographical disruption (Bury, 1982), requiring continuous processes of adjustment and reorganization (Corbin & Strauss, 1987 ; Charmaz, 1991 ). A first domain concerns communication and trust in the physician–patient relationship. Clear, empathetic, and consistent communication emerged as crucial not only for understanding treatment pathways but also for reducing uncertainty and distress. This finding resonates with previous research showing how patient-centered communication directly affects adherence, psychological well-being, and perceived quality of life (Epstein & Street, 2007 ; Butow et al., 2012 ). In the case of experimental therapies - often perceived as a “last option” - trust in the medical team becomes a prerequisite for engagement, echoing evidence on the challenges of informed consent in oncology trials (Joffe et al., 2017 ). A second domain is informal and social support. Family members and friends represent an indispensable resource for patients, providing both practical and emotional support. This confirms prior evidence that social ties enhance resilience, coping, and health outcomes (Thoits, 2011 ; Uchino, 2009 ). Yet, our findings also reveal ambivalence: alongside protection and reassurance, caregivers report anxiety, guilt, and relational tensions, highlighting the hidden emotional and organizational burden of caregiving (Northouse et al., 2012 ). A third dimension is the emotional and existential impact of AML. Fear of death, anxiety about relapse, and concerns for loved ones are recurring themes. At the same time, some patients reframe their experience by mobilizing spiritual resources or alternative forms of meaning-making. In line with Frank’s ( 1995 ) idea of the “wounded storyteller,” AML patients often rearticulate their identity and life priorities through the confrontation with mortality. These findings point to the need for systematic integration of psycho-oncological and existential care into treatment pathways (Holland & Weiss, 2010 ; NCCN, 2024). Finally, the results highlight the logistical and economic burden associated with AML. Even in contexts where pharmacological treatments are covered by public health systems, indirect costs (travel, accommodation, loss of income) significantly affect patients and families. These findings echo earlier studies on how chronic illness reshapes daily life, roles, and social identities (Charmaz, 1991 ), and reinforce the importance of formal support structures such as patient associations, accommodation facilities, and local welfare services. Overall, our findings suggest that QoL in AML results from the intersection of clinical and extra-clinical factors. Treatment success cannot be evaluated without considering emotional well-being, relational resources, social and economic constraints, and existential meanings. LIMITATIONS This study has some limitations. First, the qualitative design and the relatively small sample size do not allow for statistical generalization of the findings. The narratives were collected in three European countries, which may limit transferability to other cultural or healthcare contexts. In addition, most participants were in remission at the time of the interview, which may have influenced how they reflected on their experiences compared with those undergoing acute treatment. Finally, while the Living Labs enriched the analysis by incorporating caregivers’ and professionals’ perspectives, the number of participants was limited, and the results should therefore be considered exploratory. Despite these limitations, the study provides valuable insights into the lived experiences of AML patients and their caregivers, highlighting aspects of quality of life that are often overlooked in clinical research. CONCLUSION This study confirms that Acute Myeloid Leukemia (AML) profoundly affects patients’ quality of life, extending far beyond the biomedical dimension to encompass everyday routines, family relations, and existential concerns. Patients’ narratives reveal how physical symptoms, psychological distress, and economic challenges intertwine with the reorganization of social and family roles, producing a constant negotiation between vulnerability and the pursuit of normality. Within this landscape, informal caregivers emerge as indispensable co-producers of care, bearing an invisible yet substantial emotional, organizational, and economic load that requires systematic acknowledgment and structured support. Recent evidence reinforces this perspective. Oliva et al. ( 2025 ) have shown that family members of leukemia patients experience significant emotional and psychosocial strain, with caregivers of AML patients reporting the highest levels of psychological burden and disruptions in daily and professional life. Similarly, Mott et al. ( 2024 ) highlight how patients’ treatment preferences are not limited to clinical efficacy but include concerns for quality of life, treatment convenience, and the possibility of maintaining personal agency throughout the therapeutic journey. Together, these studies underscore that the meaning of “treatment success” must integrate both clinical outcomes and lived experiences. From a clinical standpoint, these findings stress the need to embed empathetic and transparent communication, psycho-oncological care, and supportive infrastructures throughout the treatment pathway. In line with the broader literature on patient preferences, fostering spaces for shared decision-making and psychosocial support can mitigate distress and strengthen patient and caregiver engagement. From a policy perspective, improving quality of life for AML patients and their caregivers demands investments that transcend pharmacological innovation. Community-based services, flexible work arrangements, and economic support mechanisms are essential to offset the hidden costs of illness. Formal recognition of caregiving roles—both at the institutional and policy levels—would also contribute to a more equitable and sustainable care system. Finally, future research should expand to different socio-cultural contexts and explore survivorship trajectories, with particular attention to the social reconstruction of daily life after treatment. Interventions aimed at fostering resilience, relational balance, and participation can play a decisive role in promoting a patient- and family-centered approach to quality of life. Declarations Funding information: This research was conducted within the IMPACT-AML project, funded by the European Union’s Horizon Europe Research and Innovation Programme (HORIZON-MISS-2022-CANCER-01) under Grant Agreement No. 101104421. Author Contribution Elisa Castellaccio conceived the study, conducted the qualitative data analysis, and drafted the main manuscript text. Samantha Nier provided supervision throughout the research process and critically revised the manuscript, strengthening the theoretical framing. Giovanni Martinelli contributed to the interpretation of findings, particularly enhancing the data analysis sections, and critically reviewed the entire manuscript. All authors read and approved the final version of the manuscript. Acknowledgement This study was carried out within the IMPACT-AML project. The authors would like to express their sincere gratitude to Antonio Maturo, Giovanni Marconi and Gerardo Musuraca for their clinical support and guidance throughout the research process. We warmly thank Simone Adelsbach, Martina Vittoria Minguzzi, and Maria Belles Esteller for their essential contribution to the design and conduct of the interviews.We are also grateful to Chiara Zingaretti and Federica Campacci for their valuable support in participant recruitment. Our deepest appreciation goes to all patients, family caregivers, and healthcare professionals who generously shared their experiences through interviews and Living Labs, making this study possible.Finally, we thank all partners of the IMPACT-AML consortium for their continuous collaboration and insightful feedback during the development of this work. References Becker, E. (1973). The Denial of Death . Free. Bensing, J. (2000). Bridging the gap. The separate worlds of evidence-based medicine and patient-centered medicine. Patient Education and Counseling , 39 (1), 17–25. Bowling, A. (2005). Measuring health. Third . Open University. 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A systematic review of quality of life research in medicine and health sciences. Quality of Life Research , 28 , 2641–2650. 10.1007/s11136-019-02214-9 Holland, J. C., & Weiss, T. R. (2010). The Human Side of Cancer: Living with Hope, Coping with Uncertainty . HarperCollins. Joffe, S., Cook, E. F., Cleary, P. D., Clark, J. W., & Weeks, J. C. (2017). Quality of informed consent in cancer clinical trials: A cross-sectional survey. The Lancet Oncology , 2 (5), 266–272. Kaplan, R. M., & Bush, J. W. (1982). Health-related quality of life measurement for evaluation research and policy analysis. Health Psychology , 1 , 61–80. Kuyken, W., & Group, T. W. (1995). The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Social Science And Medicine , 41 , 1403–1409. Luhmann, N. (1979). Trust and Power . Wiley. Mayo, N. (2015). Dictionary of Quality of Life and Health Outcomes Measurement . International Society for Quality of Life Research. Moons, P., Budts, W., & De Geest, S. (2006). Critique on the conceptualisationof quality of life: a review and evaluation of different conceptual approaches. International Journal Of Nursing Studies , 43 , 891–901. Mott, D. J., Hitch, J., Nier, S., Pemberton-Whiteley, Z., & Skedgel, C. (2024). Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia in the United Kingdom: A Discrete Choice Experiment. Patient preference and adherence , 1243–1255. National Comprehensive Cancer Network (NCCN). (2024). NCCN Guidelines for Patients . Distress and Psychosocial Support. Northouse, L., Williams, A. L., Given, B., & McCorkle, R. (2012). Psychosocial care for family caregivers of patients with cancer. Journal of Clinical Oncology , 30 (11), 1227–1234. Visser, O., Trama, A., Maynadié, M., Stiller, C., Marcos-Gragera, R., De Angelis, R., Mallone, S., Tereanu, C., Allemani, C., Ricardi, U., & Schouten, H. C. (2012). Incidence, survival and prevalence of myeloid malignancies in Europe. European Journal of Cancer Volume , 48, Issue 17 ,, 3257–3266. https://doi.org/10.1016/j.ejca.2012.05.024 Oliva, E. N., Ionova, T., Nier, S., Pemberton-Whiteley, Z., York, N., Costello, D., & Salek, S. (2025). Disease and treatment burden in patients with leukaemia: family members/partner perspective. Frontiers in Hematology , 4 , 1570055. Peasgood, T., Brazier, J., Mukuria, C., & Rowen, D. (2014). A conceptual comparison of well-being measures used in the UK. Policy Research Unit in Economic Evaluation of Health and Care Interventions Universities of Sheffield and York. EEPRU Research Report 026. Policy paper/document 01/09/2014. Peipert, J. D., Efficace, F., Pierson, R., Loefgren, C., Cella, D., & He, J. (2022). Patient-reported outcomes predict overall survival in older patients with acute myeloid leukemia. J Geriatr Oncol. ;13(7):935–939. doi: 10.1016/j.jgo.2021.09.007. Epub 2021 Sep 11. PMID: 34521609. Pemberton-Whiteley, Z., Nier, S., Geissler, J., Wintrich, S., Verhoeven, B., Christensen, R. O., Salek, S., Oliva, E. N., Ionova, T., & Bradley, J. (2023). Understanding Quality of Life in Patients With Acute Leukemia, a Global Survey. J Patient Cent Res Rev , 10 (1), 21–30. PMID: 36714002; PMCID: PMC9851391. Rejeski, W. J., & Mihalko, S. L. (2001). Physical activity and quality of life in older adults. J Gerontol Ser A Biol Sci Med Sci . ; 56A(Special Issue II):23–35. Saeed, A., Tasleem, Z., Muhammad, S. A., et al. (2025). Economic Burden of Acute Myeloid Leukemia in European Union: results from a systematic review of literature. Pharmacoeconomics , 9 , 365–378. Salek, S., Nier, S., Pemberton-Whiteley, Z., Ionova, T., Ianni, G., Tripepi, G., & Oliva, E. N. (2025). Impact of leukemia subtype and demographics on patient quality of life in 76 countries: a cross-sectional study. Frontiers in Hematology , 3 , 1502166. Spitzer, W. O. (1987). State of science 1986: quality of life and functional status as target variables for research. J Chronic Dis , 40 , 465–471. Street, R. L., Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Education and Counseling , 74 (3), 295–301. Thoits, P. A. (2011). Mechanisms linking social ties and support to physical and mental health. Journal of Health and Social Behavior , 52 (2), 145–161. Turner, V. (1969). The Ritual Process: Structure and Anti-Structure. Uchino, B. N. (2009). Understanding the links between social support and physical health: A life-span perspective with emphasis on the separability of perceived and received support. Perspectives on Psychological Science , 4 (3), 236–255. Wellman, B., & Wortley, S. (1990). Different strokes from different folks: Community ties and social support. American Journal of Sociology , 96 (3), 558–588. Whoqol Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine , 41 (10), 1403–1409. https://doi.org/10.1016/0277-9536(95)00112 Williams, S. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Sociology of Health & Illness , 22 (1), 40–67. Footnotes AIL Forlì-Cesena is the Italian Association against Leukemia, Lymphoma and Myeloma, which works to help cover the costs of scientific research on leukemia, lymphoma, myeloma, and other hematologic diseases. It also supports the organization and improvement of socio-health services and assistance for people affected by hematologic disorders and their families, pursuing the objectives set out in Article 4 of the National AIL Statute. AIL accommodation facilities are housing structures provided by the Italian Association against Leukemia, Lymphoma and Myeloma (AIL) to offer free or low-cost temporary accommodation to patients and their families during treatment periods. These facilities, usually located near hospitals or hematology centers, aim to reduce the logistical and financial burden associated with frequent travel and prolonged hospital stays, while fostering proximity between patients, caregivers, and healthcare services. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8212442","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":553989210,"identity":"c408d993-9bac-4ddd-8f9b-a826a99e7650","order_by":0,"name":"Elisa 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09:22:59","extension":"html","order_by":4,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":174267,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8212442/v1/8c24b8c01a5471cbcc9cb332.html"},{"id":107481689,"identity":"71249226-bfa2-4cec-ae76-32b343ff0729","added_by":"auto","created_at":"2026-04-22 02:19:40","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":811281,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8212442/v1/b4644fbe-6dfe-4c9f-bf35-297eb91b20e5.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Bridging Clinical Care and Everyday Life: Insights on Quality of Life in Acute Myeloid Leukemia","fulltext":[{"header":"INTRODUCTION","content":"\u003cp\u003eAcute myeloid leukemia (AML) is a hematological malignancy originating in the bone marrow and characterized by its rapid progression, which justifies the term \u0026ldquo;acute.\u0026rdquo; It develops from immature hematopoietic stem cells (blasts) that, due to errors or mutations during the maturation process, undergo malignant transformation.\u003c/p\u003e\u003cp\u003eIn Europe, the estimated annual incidence is about 3\u0026ndash;4 cases per 100,000 people, reaching up to 10 cases per 100,000 among individuals over 65, who represent nearly 70% of all cases (Visser, 2023; Saeed, 2025). AML is the most common form of leukemia in adults, with a higher prevalence in men and an incidence that increases with age. The 5-year survival rate in Europe is approximately 17\u0026ndash;19%, significantly lower than for other myeloid neoplasms such as chronic myeloid leukemia (44%). Overall, about 43,000 new cases are diagnosed each year.\u003c/p\u003e\u003cp\u003eThe impact of AML on patients\u0026rsquo; lives is profound, extending beyond clinical aspects to personal and social dimensions. Several studies (e.g., Pemberton-Whiteley et al., \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Buckley et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Forsythe et al., 2019; Peipert et al., \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Salek et al., \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e2025\u003c/span\u003e) show that patients\u0026rsquo; quality of life (QoL) is severely compromised, with difficulties in self-care, loss of autonomy, social isolation, and disruption of work and personal relationships, often accompanied by high levels of anxiety and depression. The consequences also extend to economic and logistical challenges, deeply affecting the daily lives of patients and their families (Oliva et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2025\u003c/span\u003e). Family caregivers experience an equally significant impact, sometimes greater than that of the patients themselves, particularly in acute rather than chronic forms of leukemia.\u003c/p\u003e\u003cp\u003eThe concept of QoL was introduced into medical literature as early as the 1960s (Elkinton, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e1966\u003c/span\u003e; Spitzer, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e1987\u003c/span\u003e). Its importance has grown over time with the advent of treatments capable of prolonging survival, sometimes at the expense of QoL, or conversely improving it without affecting life expectancy (Kaplan, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e1982\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eDespite extensive research, no single definition of QoL exists. The World Health Organization (WHOQOL Group, \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e1995\u003c/span\u003e) defines it as \u0026ldquo;an individual\u0026rsquo;s perception of their position in life, in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns.\u0026rdquo; Many authors emphasize the difficulty of reaching a definitive definition (Brazier et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2014\u003c/span\u003e; Moons et al., \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2006\u003c/span\u003e), proposing various approaches based on human needs, subjective well-being, expectations, or phenomenological perspectives (Ferrans, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e1990\u003c/span\u003e; Bowling, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2005\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe literature on well-being, closely related to QoL, further distinguishes between approaches focused on objective indicators, preference satisfaction, hedonism, prosperity, and life satisfaction (Peasgood, 2005). This has produced heterogeneous definitions, ranging from those that describe QoL as \u0026ldquo;a conscious cognitive judgment of life satisfaction\u0026rdquo; (Rejeski, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e2001\u003c/span\u003e) to those highlighting its dependence on culture and value systems (Kuyken, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e1995\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eWithin this debate, the notion of health-related quality of life (HRQoL) has gained prominence, referring to the impact of disease and treatment on disability, daily functioning, and the ability to lead a life perceived as meaningful. More specifically, HRQoL has been defined as the value assigned to life duration, modified by impairments, functional states, perceptions, and opportunities influenced by disease, treatment, and health policies (Mayo, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e2015\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAs a complex and multidimensional construct, QoL is therefore measured using diverse instruments that are not always directly comparable (Fayers \u0026amp; Machin, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2016\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eBuilding on this framework, the present study adopts a qualitative, narrative-based approach to explore the QoL of AML patients. Life stories allow us to capture the challenges of living with the disease and the meanings attributed to such experiences, identifying factors that positively and negatively influence QoL. Particular attention is devoted to the role of medical support, not only in clinical but also in social and existential terms, and its impact on quality of life. The study also includes the perspectives of family caregivers and healthcare professionals, thus enriching and broadening the interpretative framework.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cp\u003eThe study was conducted in two phases of data collection: in-depth narrative interviews and two Living Labs. A total of 26 interviews were carried out with patients diagnosed with AML across three European countries (9 in Italy, 10 in Germany, and 7 in Spain). Inclusion criteria required participants to be between 18 and 90 years old, have a confirmed diagnosis of AML, and the capacity to provide informed consent.\u003c/p\u003e\u003cp\u003e All interviews were conducted in the native language of each country (Italian, German, and Spanish) to ensure participants’ full comprehension and comfort. As leader of the Work Package, we provided the interview guide in English, which was then independently translated by each national team. Once completed, the interviews were audio-recorded, transcribed verbatim in the original language, and subsequently translated into English before being shared with the coordinating team for cross-country analysis.\u003c/p\u003e\u003cp\u003eThe semi-structured interview guide was developed in collaboration with the Acute Leukemia Advocates Network (ALAN) and was inspired by validated quality-of-life assessment tools such as the Family Reported Outcome Measure (FROM-16; Golics et al., \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e2014\u003c/span\u003e) and the Haematological Malignancy Patient Reported Outcome (HM-PRO; Goswami et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). The questions explored multiple domains of daily life, including clinical and symptomatic aspects, treatment experiences, physical and psychological dimensions, social and relational factors, as well as economic and spiritual concerns.\u003c/p\u003e\u003cp\u003eThe sample ranged in age from 22 to 77 years (mean = 55), with a majority of women (17 women and 9 men). Most participants (n = 14) were in remission at the time of the interview, while eight had active disease and three were experiencing relapse. Detailed demographic information about the participants is provided in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. The analysis of the interviews was conducted using a qualitative content analysis approach. In a first stage, 32 thematic units were identified, corresponding to recurring elements and salient aspects that emerged from the narratives. Coding was carried out inductively, through an in-depth reading of the transcripts, with particular attention to features significant for understanding the illness experience.\u003c/p\u003e\u003cp\u003eSubsequently, the identified units were grouped and refined at the conceptual level, resulting in seven overarching interpretive categories, here defined as “thematic core”. These categories provided a framework for a transversal interpretation of patients’ experiences, highlighting the main experiential turning points associated with acute myeloid leukemia.\u003c/p\u003e\u003cp\u003eIn addition, an online Living Lab was conducted with 13 Italian hematologists, coordinated by IRST, employing the Nominal Group Technique to explore physicians’ perceptions of what they considered to be the main needs of AML patients and to identify potential areas for improvement in care delivery and treatment pathways.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eOverview of patients interviewed’s demographics. Each participant was assigned a pseudonym to ensure confidentiality while allowing cross-country comparison. The pseudonym consists of a randomly selected initial letter used for coding, followed by a two-letter country code (IT = Italy, GE = Germany, SP = Spain) and the participant’s age in years.\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"7\"\u003e\u003c/colgroup\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePseudonym\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAge\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eStatus\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u003cp\u003eNationality\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c6\"\u003e\u003cp\u003eAML\u003c/p\u003e\u003cp\u003eDiagnosis\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c7\"\u003e\u003cp\u003eOccupation\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eU_it69\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e69\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eActive, since Easter 2022\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eMetalworker / retired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eL_it77\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e77\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eActive, since 25.02.2022\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eShirtmaker / retired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eB_it75\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e75\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eActive, since 2010 (in treatment since 2021)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003ePresident, cooperative SCI\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eA_it30\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e30\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eRelapsed, since 12.2022\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eE_it69\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e69\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eMid 2023. Active, in treatment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired (yacht shipyard)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eI_it41\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e41\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e27/11/2022. Remission. Transplant, maintenance therapy\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eC_it45\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e45\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e03/09/2019. Remission, second transplant\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN_it44\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e44\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e07/2014. Recovered\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eUnemployed at diagnosis (now works in a bank)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eZ_it56\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e56\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eItaly\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e04/2024. Remission awaiting transplant\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eTiler\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eR_ge71\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e71\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e10/2020. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSelf-employed worker\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eL_ge36\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e36\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSingle\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e12/2017. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSelf-employed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eL_ge33\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e33\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e02/2021. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eE_ge75\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e75\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e03/2021. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eR_ge52\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e52\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e05/2016. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eWorker\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eR_ge66\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e66\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e07/2021. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eV_ge28\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e28\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSingle\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e05/2023. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN_ge49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e49\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e04/2022. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eCivil servant\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eD_ge48\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e48\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e02/2022. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003ePensioner with reduced earning capacity\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eE_ge51\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e51\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eGermany\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e12/2020. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eT_sp72\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e72\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e—\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e25/03/2024. Active\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eR_sp65\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e65\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e06/2024. Active\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eV_sp70\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e70\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e04/2024. Active\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eW_sp68\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e68\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e02/2024. Remission\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eO_sp22\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e22\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eM\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSingle\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e04/04/2022. Relapsed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eStudent\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eG_sp67\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e67\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDivorced\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e24/01/2025. Active\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eV_sp50\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e50\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eF\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e01/2024. Relapsed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eOn sick leave\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/table\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eIn parallel, a Living Lab was organized with family caregivers (n = 4), carried out with the support of AIL Forlì-Cesena\u003csup\u003e1\u003c/sup\u003e and conducted through the World Café Method, which has the benefit of allowing an informal and engaging discussion on the practical, emotional, and organizational challenges of caregiving. In addition, an online Living Lab was conducted with 13 Italian hematologists, coordinated by IRST, using the Nominal Group Technique to elicit physicians’ perspectives on what they perceived as the main needs of patients with AML and to identify potential areas for improvement in care delivery and treatment pathways (Mott et al., \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e2024\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAll materials collected (interviews and Living Labs) were subjected to content analysis through thematic coding procedures and cross-checking among researchers, in order to ensure methodological rigor and reliability of the findings.\u003c/p\u003e\u003cp\u003e The study was conducted in accordance with national and European regulations on research ethics. Ethical approval was obtained from the Ethics Committee of IRST IRCCS, Meldola, Italy, and from the corresponding local ethics committees in Germany and Spain. All participants were informed about the objectives and procedures of the research and provided written informed consent before participation. Anonymity and confidentiality were ensured throughout the research process, and interview excerpts have been pseudonymized in the present article.\u003c/p\u003e"},{"header":"RESULTS OF THE INTERVIEWS","content":"\u003cp\u003eThe analysis of the interviews revealed a complex and multifaceted picture of the lived experience of patients diagnosed with AML. Through the coding and subsequent conceptual grouping of the thematic units, seven overarching “thematic core” were identified. These core reflect the main experiential dimensions emerging from the narratives and capture how individuals make sense of their illness, navigate healthcare interactions, and reconfigure everyday life in the context of a life-threatening disease.\u003c/p\u003e\u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e summarises these seven meaning thematic core, providing for each a brief description, the corresponding analytical units, and the number of codes associated with them. In the following sections, each nucleus is examined in depth and illustrated through selected narrative excerpts that exemplify the range and nuances of patients’ experiences.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eMeaning cores.\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003c/colgroup\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTHEMATIC CORE\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eUNITS OF ANALYSIS\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003en° of codes\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e1. Clinical condition and symptomatology\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDiagnosis · Symptoms · Side effects · Physical changes due to illness · Covid-19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e159\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e2. Care pathway and healthcare management\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTreatment and care · Issues related to disease management · Formal support for disease management\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e76\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e3. Information, communication, and doctor–patient relationship\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eCommunication · Relationship with doctors/trust · Negative events · Seeking information · Lay expertise · Advice\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e137\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e4. Emotional needs and psychological support\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEmotional/psychological needs/fears · Psychological support (formal) · Psychological support (family/friends) · Anger\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e132\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e5. Informal support networks and social relationships\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eInformal support for disease management · Social relationships (friends) · Family relationships · Peer relations (patients) / peer support groups\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e93\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e6. Daily life, work, and finances\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTypical day/daily life · Work-related issues · Economic aspects\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e76\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e7. Existential, spiritual dimension and confrontation with death\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSpiritual aspects · Relationship with death · Outlook on the future\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e70\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/table\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003e1. Clinical condition and symptomatology\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe experience of being diagnosed with acute myeloid leukemia (AML) and the onset of symptoms emerge in the accounts as sudden, often traumatic events that abruptly interrupt the ordinary course of life. These are moments characterized by disorientation, fear, and vulnerability. Sociological literature has widely discussed such experiences, interpreting them as \u003cem\u003ebiographical disruption\u003c/em\u003e (Bury, 1982), that is, a sudden fracture that forces individuals to redefine identities and existential trajectories. Other authors have spoken of disruption and existential disorientation (Williams, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e2000\u003c/span\u003e; Charmaz, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e1991\u003c/span\u003e), or of \u003cem\u003ebiographical work\u003c/em\u003e and the continuous effort of readjustment (Corbin \u0026amp; Strauss, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e1987\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn this context, the diagnosis of AML appears as a critical event (Turner, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e1969\u003c/span\u003e) that redefines not only the body and health, but also the relational and social fabric of the person. The discovery of the disease can occur in different ways: through acute symptoms requiring immediate hospitalization, or more insidiously, with non-specific signals initially underestimated or attributed to other conditions (Global Leukemia Experience Survey \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e2023\u003c/span\u003e Report, 2024)\u003c/p\u003e\n\u003ch3\u003eSurprise and disorientation at the time of diagnosis\u003c/h3\u003e\n\u003cp\u003e24 patients describe the diagnosis as a real \u0026ldquo;shock,\u0026rdquo; an event that suddenly bursts in and upsets everyday life. For example:\u003c/p\u003e\u003cp\u003e\u0026ldquo;In the morning at eight o\u0026rsquo;clock my son was talking with a doctor and I heard the word leukemia and\u0026hellip; I remember I took it so badly that\u0026hellip; leukemia for me was the same as death.\u0026rdquo; (U_it69)\u003c/p\u003e\u003cp\u003e\u0026ldquo;When they told me that they would move me to hematology, I had already understood that it was not something simple, there was something seriously wrong, so I was already a little prepared.\u0026rdquo; (A_it30)\u003c/p\u003e\u003cp\u003e\u0026ldquo;The diagnosis. When doctor said I had cancer, it was devastating.\u0026rdquo; (W_sp68)\u003c/p\u003e\u003cp\u003eThe diagnosis sometimes occurs after a long period of uncertainty, during which patients move between different doctors while experiencing vague and non-specific symptoms; in other cases, it comes suddenly, following an acute illness. As confirmed by the 2024 Global Leukemia Experience Survey, the time leading to diagnosis varies considerably. Overall, 62% of patients consulted a healthcare professional within three months of the first symptoms. However, those with chronic leukemia reported longer and more complex diagnostic journeys than patients with acute forms. Specifically, 27% of individuals with chronic lymphocytic leukemia and 24% with chronic myeloid leukemia waited more than six months before seeking medical attention, compared with only 2% of those with acute lymphoblastic leukemia and 4% with acute myeloid leukemia. Moreover, most patients (90%) who experienced symptoms prior to diagnosis were unaware that these could be signs of leukemia:\u003c/p\u003e\u003cp\u003e\u0026ldquo;I had already been in hospital for three weeks at that point, I was given antibiotics and nothing got better. I then figured out for myself that it could be leukemia. My HB level was as high as 6.7 and the doctors still hadn't done anything. [\u0026hellip;] Then they did the bone marrow puncture the next day and in the afternoon a doctor or medical student from the oncology department came and told me that I had leukemia. I didn't have time to process this news because half an hour later I had to go back for drainage because of the fluid in my stomach. I was then transferred to the oncology department the next day.\u0026rdquo; (V_ge28)\u003c/p\u003e\n\u003ch3\u003eNon-specific, overlooked, or underestimated symptoms\u003c/h3\u003e\n\u003cp\u003eThe initial symptoms of leukemia are often vague, non-specific, and easily attributed to other benign or transient conditions. Patients frequently report experiencing tiredness, muscle or bone pain, fever, pallor, recurrent infections, unexplained weight loss, shortness of breath, or general asthenia. As highlighted by the Global Leukemia Experience Survey \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e2023\u003c/span\u003e (Picker, 2024), 82% of patients reported experiencing symptoms before receiving a diagnosis, yet 90% were unaware that these could indicate leukemia. Fatigue, fever or night sweats, and recurrent infections were among the most commonly reported symptoms, often overlooked or misinterpreted by both patients and healthcare professionals, contributing to delayed diagnosis and uncertainty during the pre-diagnostic phase.\u003c/p\u003e\u003cp\u003e\u0026ldquo;The first symptoms, which absolutely did not suggest something so serious, were great fatigue, the need to sleep. [\u0026hellip;] Then one day I had this very large bruise on my leg, really very large, but it disappeared within a couple of days, so when I showed it they assumed it was an insect bite.\u0026rdquo; (I_it41)\u003c/p\u003e\u003cp\u003e\u0026ldquo;I realized it because when I went up a flight of stairs, I was out of breath. I thought, well, I\u0026rsquo;ve been smoking tobacco all my life\u0026hellip;\u0026rdquo; (E_it69)\u003c/p\u003e\u003cp\u003e\u0026ldquo;Primarily tiredness and fatigue. Shortness of breath, skin rash and pallor. I had these symptoms one to two months before I saw a doctor.\u0026rdquo; (L_ge33)\u003c/p\u003e\u003cp\u003eSome report a total absence of symptoms, with the diagnosis made by chance:\u003c/p\u003e\u003cp\u003e\u0026ldquo;In this respect, my diagnosis was a purely accidental finding, I hadn't had any symptoms until then and my condition was detected very early. My doctor initially thought the lab had made a mistake and called me in again for a blood test.\u0026rdquo; (D_ge48)\u003c/p\u003e\u003cp\u003e\u0026ldquo;Yes, I didn\u0026rsquo;t feel any symptoms at all, let\u0026rsquo;s say, because I usually do my full blood tests in March and April and until 2023 they were as precise as a Rolex, really precise, throughout the whole previous winter I hadn\u0026rsquo;t had a fever, nothing, nothing, no symptoms.\u0026rdquo; (Z_it56)\u003c/p\u003e\n\u003ch3\u003eAcute and severe symptomatology\u003c/h3\u003e\n\u003cp\u003eIn other cases, the onset is more dramatic, with symptoms that severely compromise daily life and lead quickly to hospitalization:\u003c/p\u003e\u003cp\u003e\u0026ldquo;For a year and a half I was no longer the usual me\u0026hellip; but every now and then I complained. I started having symptoms I didn\u0026rsquo;t recognize, I really couldn\u0026rsquo;t stand on my feet. My legs hurt from a weakness that I can\u0026rsquo;t describe, I was constantly out of breath.\u0026rdquo; (U_it69)\u003c/p\u003e\u003cp\u003e\u0026ldquo;I had all the usual symptoms, such as night sweats, weight loss, loss of appetite, extreme pallor. But what really started it for me was a bladder infection that couldn't be treated over a long period of time and only got better briefly when I took antibiotics. After that, I was fine at first, but when I stopped taking the tablets, it got worse again. At some point I was constantly vomiting and couldn't eat for weeks.\u0026rdquo; (V_ge28)\u003c/p\u003e\u003cp\u003e\u0026ldquo;At some point, I could walk less and became tired quickly. Then, I developed large spots on my back. Examination at the dermatology clinic revealed that the spots were lymphocytes pushing out. I also always had a mild anemia. Later, I experienced severe abdominal pain.\u0026rdquo; (E_ge51)\u003c/p\u003e\n\u003ch3\u003eEmotional experience and reception of the diagnosis\u003c/h3\u003e\n\u003cp\u003eThe emotional experience associated with the onset of symptoms and, above all, with the communication of the diagnosis is often characterized by shock, disbelief, and fear for one\u0026rsquo;s own survival and that of the family. Many described the feeling of \u0026ldquo;brain freeze\u0026rdquo;.\u003c/p\u003e\u003cp\u003e\u0026ldquo;I was petrified\u0026hellip; my wife was white as a sheet. In short, it was not a good moment. Afterwards, from there, they explained what we had to do.\u0026rdquo; (Z_it56)\u003c/p\u003e\u003cp\u003eR_sp65: \u0026ldquo;Only when the doctor gave me the diagnosis, I was shocked, but for me, the only way to go on is without being the whole day thinking or worrying about it. I\u0026rsquo;m completely sure that it has been the worst moment.\u0026rdquo;\u003c/p\u003e\u003cp\u003eN_it44: \u0026ldquo;The response was devastating, in the sense that the doctor told us, you are very lucky because you have a blood problem, now we need to understand the type of problem, but you are very lucky because nowadays hemato-oncology has made great progress, you would not have been so lucky if we had found something in the bones. Now it is a sentence that many times I still remember and repeat to myself, when something a bit unpleasant happens I say, well, in bad luck there is always a bit of good luck. After he told me that, I just said: look doctor, for me this is still a bad day, thank you.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThe way in which the diagnosis is communicated and received also depends on the sensitivity of the healthcare staff and on the family and relational context in which it occurs. In addition to the fear for one\u0026rsquo;s survival, there are often anxieties about the future of loved ones, children, and family members:\u003c/p\u003e\u003cp\u003eN_ge49: \u0026ldquo;My first thought was: my children, my parents, my animals. What will happen to them when I'm gone?\u0026rdquo;\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003ePhysical and bodily changes\u003c/h2\u003e\u003cp\u003eThe disease and treatments cause profound and often permanent changes in the perception of one\u0026rsquo;s own body: loss of strength, shortness of breath, tachycardia, chronic pain, weight changes, neuropathies. Body image and identity are redefined.\u003c/p\u003e\u003cp\u003eU_it69: \u0026ldquo;Of course my life has changed\u0026hellip; I also found myself not even able to walk 200 meters uphill because then I get tachycardia\u0026hellip; so many things have changed.\u0026rdquo;\u003c/p\u003e\u003cp\u003eD_ge48: \u0026ldquo;Due to the polyneuropathy and fatigue, I'm still in a performance slump. I also sweat all day\u0026hellip; And that's despite the fact that I've been doing rehab sports for a year and have already done two rehabs. I'm not back to my old form yet and I don't know whether it will get better at some point.\u0026rdquo;\u003c/p\u003e\u003cp\u003eE_ge51: \u0026ldquo;This diagnosis and treatment were very traumatic. I feel like I'm only now realizing what actually happened to me and how I have changed. \u0026hellip;when you suddenly gain 10 kilos, have swellings, and a bald head, it's not easy for me as a woman.\u0026rdquo;\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eEffects of the Covid-19 pandemic\u003c/h3\u003e\n\u003cp\u003eThe pandemic overlapped with a condition of extreme immunological vulnerability, aggravating isolation, fear, and the organizational complexity of care.\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;Six weeks without seeing my husband; the doctors entered the room wearing double masks, no one else could come in.\u0026rdquo;\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;I was immunosuppressed and there was the pandemic: I didn\u0026rsquo;t understand whether I was staying closed in because of Covid or because of the illness.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThe \u0026ldquo;clinical condition and symptomatology\u0026rdquo; nucleus reveals how AML generates a profound biographical rupture, marked by uncertainty and vulnerability, with symptoms that are often ignored for timely diagnosis and consequences that impact every sphere of daily life. The body becomes the main \u0026ldquo;signaler\u0026rdquo; of the disease and treatments, forcing continuous negotiations between care needs and the desire for quality of life. The Covid-19 pandemic amplified, for many, pre-existing isolation and anxieties. The diagnosis of AML and its clinical course determine a sudden fracture in biographical continuity, generating an emotional burden made of fear, disorientation, a sense of loss, and the need for redefinition. On a daily level, the illness disrupts routines, relationships, and autonomy, imposing new dependencies, adaptations, and often social isolation. In the narratives, suffering and fatigue coexist with strategies of adaptation, search for meaning, and redefinition of priorities, signaling a continuous negotiation between vulnerability and the desire for normality.\u003c/p\u003e\u003cp\u003e\u003cb\u003e2. Care pathway and management of the healthcare trajectory\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe treatment of AML is described as a complex experience that intertwines clinical, organizational, and logistical dimensions. Patients\u0026rsquo; narratives portray a scenario of highly invasive therapies, frequent travel, and a daily life deeply conditioned by the disease. This demanding care pathway not only affects patients but also has a profound impact on family caregivers, who often assume a central role in coordinating appointments, managing daily care, and providing emotional and practical support. The burden of care, the unpredictability of the illness trajectory, and the constant adjustments required in everyday life contribute to significant physical and psychological strain within the family context. Within this pathway, not only challenges and difficulties emerge, but also strategies of adaptation, resources activated, and forms of support that enable patients and families to cope with the impact of AML.\u003c/p\u003e\u003cp\u003eThe therapeutic experience unfolds through different approaches\u0026mdash;from standard chemotherapy to experimental therapies and stem cell transplantation\u0026mdash;each involving significant side effects and frequent interruptions to everyday life. Alongside the clinical dimension, logistical and organizational aspects are equally critical: long distances from treatment centers, repeated trips, and economic burdens weighing heavily on patients and families. Formal supports (associations, AIL accommodation\u003csup\u003e2\u003c/sup\u003e facilities, home care) play a crucial role as indispensable resources for making treatment pathways sustainable and reducing the impact of the disease on both practical and existential levels.\u003c/p\u003e\n\u003ch3\u003eTherapeutic treatments and medical management\u003c/h3\u003e\n\u003cp\u003ePatients report undergoing different therapeutic approaches, ranging from standard chemotherapy to experimental therapies conducted within clinical trials, and stem cell transplantation.The therapy experience is often perceived as intense and invasive, with important side effects:\u003c/p\u003e\u003cp\u003eA_it30 described the experimental therapy: \u0026ldquo;It consisted of pills I was already taking, plus seven days of subcutaneous injections, two a day for seven days, plus an infusion once a week for four weeks. I did not finish it because I developed a high fever; when the fever went down I started the second cycle and now tomorrow the third will begin.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;In hospital I stayed for a month, they gave me chemotherapy after a series of evaluations, and in my case they also gave me an alternative therapy to traditional chemotherapy, considering that I was still young, so they managed to preserve my fertility.\u0026rdquo; (N_it44)\u003c/p\u003e\u003cp\u003eL_ge36: \u0026ldquo;I initially received chemotherapy. I had 99% blasts. The chemotherapy worked extremely well, bringing the blasts down to 0%, and then we proceeded with the bone marrow transplant.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese examples highlight how therapies entail significant interruptions to everyday life, requiring both physical and psychological adjustments.\u003c/p\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eChallenges in healthcare management and logistics\u003c/h2\u003e\u003cp\u003eManaging the disease often implies logistical and economic difficulties (loss of income and/or increase of expenses): frequent travel, organizational challenges, and the burden of long distances from treatment centers.\u003c/p\u003e\u003cp\u003eV_sp70: \u0026ldquo;I live an hour\u0026rsquo;s drive from the hospital, I have to get up at 6:00 to arrive on time for 8:00 appointments, and I end the day exhausted. I would like more economic and logistical support for those who live far away.\u0026rdquo;\u003c/p\u003e\u003cp\u003eW_sp68: \u0026ldquo;We live 45 minutes from the hospital, and the only available ambulance sometimes forces us to wait up to five hours.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_sp50: \u0026ldquo;I live two hours from here. In the morning they give me the blood test, I spend the morning here, and then I go to the doctor's office. When I come here my husband brings me, since I can\u0026rsquo;t drive. I have a two-hour drive, so the issue of petrol, parking, eating here, etc. are associated expenses, which make it difficult to access appointments. We schedule ourselves and come, and it is not an inconvenience, but the issue of associated expenses is an outlay. When you are discharged, they make you come every week, then every two weeks, and finally every month or two months. Now that I am admitted, my husband comes to see me, and it is the same: his food, petrol, etc.\u0026rdquo;\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eFormal support received\u003c/h2\u003e\u003cp\u003eFormal support (housing facilities, home care, logistical transport services) emerges as a crucial element in facing the challenges of the disease, facilitating access to treatment and significantly improving the quality of life of patients and their families.\u003c/p\u003e\u003cp\u003eI_it41 described the importance of AIL facilities: \u0026ldquo;So certainly the help from AIL was fundamental, because if we had also had to pay rent in XXX it would not have been possible. AIL gave us an apartment for three months post-transplant. We completely relied on them, they made a big difference.\u0026rdquo;\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;AIL helped me with accommodation and travel. The hospital provides a shuttle to take patients from the station to the hospital, it is extremely important support.\u0026rdquo;\u003c/p\u003e\u003cp\u003eN_it44: \u0026ldquo;I lived for months in the AIL house in XXX, where I had daily infusions in the day hospital. The fact of being free and not closed in the hospital completely changed my life.\u0026rdquo;\u003c/p\u003e\u003cp\u003eSupport in managing daily activities also comes through home care workers and home health services:\u003c/p\u003e\u003cp\u003eL_ge36: \u0026ldquo;Yes. After the transplant, I had a household helper for six weeks. It was crucial because I have no family here. For me, it was clear that I couldn\u0026rsquo;t manage shopping and household chores alone.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;I am still 100% severely disabled. I was granted a care degree for the first four months. This meant that a mobile care service came to our home. They helped me with showering, housework and medication management. In the beginning, I had to take an incredible number of tablets \u0026ndash; sometimes 13 in the morning and 13 in the evening, so I didn\u0026rsquo;t have the right perspective. They were immunosuppressants and things like that. After the four months, we hired a cleaning lady for a year. And of course my husband did a lot and helped me. When the rollator was gone, it was such a sign for me: You can have a normal life again.\u0026rdquo;\u003c/p\u003e\u003cp\u003eIn summary, the AML care pathway is marked by high clinical and organizational complexity, requiring continuous adaptation by patients and their families. Although therapies are essential, they profoundly affect daily life; logistical and economic difficulties amplify vulnerability. In this context, formal support and the relationship with healthcare staff become decisive resources for ensuring continuity of care and making the experience more sustainable.\u003c/p\u003e\u003cp\u003e\u003cb\u003e3. Information, communication, and the physician\u0026ndash;patient relationship\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe quality of communication between patients and healthcare professionals represents a crucial element in oncological and hematological pathways. Numerous studies have shown that informational clarity, empathy, and relational availability affect not only patients\u0026rsquo; understanding of the disease and therapeutic adherence, but also psychological well-being and overall perception of quality of life (Epstein \u0026amp; Street, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2007\u003c/span\u003e; Bensing, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2000\u003c/span\u003e). In the case of AML, characterized by rapid progression and highly invasive treatments, communication takes on even greater importance: it is not limited to the transmission of clinical information, but becomes an ongoing relational process that helps patients make sense of their illness and cope with emotions such as fear, uncertainty, and disorientation. As highlighted by the Global Leukemia Experience Survey (Picker Institute Europe, 2024) and confirmed by Salek et al. (2024), patients with acute leukemia are among the most likely to experience fear of dying and relapse, emphasizing the need for supportive communication and access to psychological counselling throughout the care pathway.\u003c/p\u003e\u003cp\u003eThe narratives collected show that the relationship with physicians is not limited to a medical interaction, but takes the form of a space of trust and negotiation, where the way in which diagnoses, prognoses, and therapeutic options are communicated profoundly shapes patients\u0026rsquo; experiences. In this perspective, communication is an integral part of care, and becomes decisive in fostering processes of adjustment and resilience.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eCommunication of the diagnosis and disease progression\u003c/h2\u003e\u003cp\u003eThe initial communication of the diagnosis often represents a moment of strong emotional impact. Patients emphasize the importance of the manner and sensitivity with which this news is delivered, as also highlighted by the Global Leukemia Experience Survey (Picker Institute Europe, 2024). Less than half of patients reported that their diagnosis was fully explained in a way they could understand, and only about half said they were told in a sensitive way. Moreover, older patients were more likely to receive the diagnosis alone, underscoring how the relational and emotional dimensions of communication are crucial in shaping the overall experience of the disease.\u003c/p\u003e\u003cp\u003eI_it41 reported a traumatic communication: \u0026ldquo;The emergency room doctor looked at the test results and immediately gave me this sentence: \u0026lsquo;it is leukemia.\u0026rsquo; It seemed a bit tactless to me; there is always also a human side that could be managed better.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_ge28: \u0026ldquo;No, the information about this was inadequate. However, the long-term consequences are different for everyone. In terms of risk, my senior physician scared me a little.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;The doctor said that the immune system is like a dog that protects you; in my case, however, it was not responding well. She used simple words, unforgettable and very useful for helping me understand the situation.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese examples indicate how crucial it is to balance clarity of information with emotional sensitivity at the time of diagnosis.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003eInformation on treatments and side effects\u003c/h2\u003e\u003cp\u003eThe adequacy of information about treatments, risks, and side effects represents another key point. Perceptions vary depending on the physician and the institution. The greatest difficulties were reported in interviews conducted in Germany and Spain, although in almost all cases the professionals who accompanied patients throughout therapy eventually established a relationship of trust.\u003c/p\u003e\u003cp\u003eL_ge33: \u0026ldquo;As soon as I rang to say that I was feeling sick, someone immediately came with anti-nausea medication. There was a lot of attention to minimizing my discomfort.\u0026rdquo;\u003c/p\u003e\u003cp\u003eL_ge36: \u0026ldquo;I remember that a doctor told me: \u0026lsquo;I don\u0026rsquo;t want to give you too much hope.\u0026rsquo; This had a very strong impact on me.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_ge28 recounted initially insufficient information: \u0026ldquo;The information about long-term effects was inadequate. A doctor told me shortly before the transplant: \u0026lsquo;With your rare mutation, mortality is high,\u0026rsquo; without further explanation.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThe communicative approach adopted by medical staff significantly influences patients\u0026rsquo; ability to manage anxieties and expectations related to treatment, especially in the initial phase.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003eTrust and relationship with healthcare staff\u003c/h2\u003e\u003cp\u003eThe physician\u0026ndash;patient relationship emerges as a central element for well-being and for the ability to face the illness. Trust in the treating physicians is often described as a fundamental pillar of the therapeutic pathway. The quality of communication and the human sensitivity of healthcare staff strongly affect the overall experience.\u003c/p\u003e\u003cp\u003eC_it45 highlighted how the physician\u0026rsquo;s empathy changed her approach to the illness: \u0026ldquo;My doctor told me: \u0026lsquo;Don\u0026rsquo;t think only about leukemia, otherwise you stop living.\u0026rsquo; Those words changed everything. Such a relationship makes the therapeutic pathway easier. In the hospital, empathy and trust are important, the human relationship I have with them is essential.\u0026rdquo;\u003c/p\u003e\u003cp\u003eN_it44 described a relationship of great availability: \u0026ldquo;In the middle of the night my husband and I called Dr. XX, who called us back and reassured us, all during the night. So from a professional and human point of view I must say I received exceptional protection and competence.\u0026rdquo;\u003c/p\u003e\u003cp\u003eL_ge36: \u0026ldquo;It was very well managed. The team came to see me about five times a day.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_sp50: \u0026ldquo;Luckily I have met very good health professionals, and I am 100% happy with the clinical part.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese examples demonstrate how availability, empathy, and open communication contribute to creating a positive and supportive therapeutic environment. An empathetic and transparent relationship with healthcare staff is fundamental in the care pathway.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\u003ch2\u003eCommunication and involvement of family members\u003c/h2\u003e\u003cp\u003eAnother important aspect concerns physicians\u0026rsquo; ability to involve and properly inform patients\u0026rsquo; family members / informal carers, recognizing their fundamental role in the care pathway:\u003c/p\u003e\u003cp\u003eL_ge33: \u0026ldquo;Initially my husband was not involved, due to Covid he could not participate in the meetings. This was difficult because he was excluded from the information.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_sp65 described the opposite situation, of full family inclusion: \u0026ldquo;The doctor was exceptional, she spent an hour with my husband and my wife answering all our questions.\u0026rdquo;\u003c/p\u003e\u003cp\u003eIn conclusion, the quality of communication and the trust established with healthcare professionals emerge as decisive factors in the AML therapeutic pathway. A relationship based on clarity, empathy, and availability not only supports adherence to treatment, but also contributes to generating a sense of safety and containment in situations of great vulnerability. As emphasized by Giddens (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e1990\u003c/span\u003e) and Luhmann (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e1979\u003c/span\u003e), trust constitutes an essential mechanism for reducing uncertainty and making complexity manageable: in the context of illness, it becomes an integral part of care itself.\u003c/p\u003e\u003cp\u003e\u003cb\u003e4. Emotional needs and psychological support\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe experience of AML is not only a clinical condition but also an emotional and existential challenge that affects identity, relationships, and future plans. Anxiety, fear, and a sense of vulnerability often accompany patients throughout the therapeutic pathway, configuring what the literature defines as disruption or \u003cem\u003ebiographical rupture\u003c/em\u003e (Bury, 1982), namely a radical interruption of life continuity. In this framework, the need for psychological support emerges as a crucial and transversal dimension: not an accessory aspect, but an integral part of care (Holland \u0026amp; Weiss, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2010\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe narratives collected show that emotional experiences fluctuate between fear of death, feelings of guilt toward family members, anxiety about relapse, and the desire for reassurance. At the same time, the value of support\u0026mdash;both formal and informal\u0026mdash;emerges as fundamental in containing distress and sustaining adaptation processes. Psycho-oncology, family closeness, and friendship networks represent decisive resources, though their accessibility and continuity are uneven. In this sense, the emotional experience of AML highlights the importance of stably integrating psychological support into treatment pathways, in line with international recommendations on person-centered cancer care (National Comprehensive Cancer Network, 2024).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\u003ch2\u003eFear, anxiety, and concerns for the future\u003c/h2\u003e\u003cp\u003ePatients frequently report strong fears related to the course of the disease, the uncertainty of the future, and the concrete possibility of not surviving:\u003c/p\u003e\u003cp\u003eU_it69: \u0026ldquo;There were moments when I no longer believed, thinking: if Mihajlovic, Piero Angela, Berlusconi died, who had all the possible treatments, who am I to make it? This fear of dying devastated me psychologically.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_ge28: \u0026ldquo;I saw myself walking hand in hand with cancer towards death. Only afterwards did I regain the strength to fight.\u0026rdquo;\u003c/p\u003e\u003cp\u003eE_ge75t: \u0026ldquo;I felt despair and panic. Fear of dying. Fears about the future.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese examples underline how fear, anxiety, and uncertainty about the future are central to the emotional experience of illness.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\u003ch2\u003eEmotional needs and the desire for reassurance\u003c/h2\u003e\u003cp\u003ePatients express the need for constant reassurance, emotional support, and responses to their psychological needs, often in relation to the family and medical environment:\u003c/p\u003e\u003cp\u003eA_it30: \u0026ldquo;I would like to understand how to behave when I return home to my daughter, who has been away for a long time. This concern causes me anguish.\u0026rdquo;\u003c/p\u003e\u003cp\u003eI_it41: \u0026ldquo;The huge difference for me was made by the nurses in XXX, they were always emotionally present. They gave me enormous strength, even just with a smile.\u0026rdquo;\u003c/p\u003e\u003cp\u003eO_sp22: \u0026ldquo;Above all, I needed to talk about it with my family. Another thing I also needed is that not many people would know about it. Not because I was embarrassed or anything like that, but because there are people who call you and ask you questions, and the next day they call you again and ask the same questions, so you realize that many people don\u0026rsquo;t listen, and they don\u0026rsquo;t care about you, they care about making themselves look good.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese accounts highlight the importance of an emotionally supportive context, capable of responding to patients\u0026rsquo; individual needs and vulnerabilities.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec19\" class=\"Section2\"\u003e\u003ch2\u003eFormal psychological support\u003c/h2\u003e\u003cp\u003eThe psychological support received by patients mainly came from professional figures such as psycho-oncologists, but also from other professionals aiming to promote psychological well-being and emotional support. Some participants clearly emphasized the positive value of psycho-oncological support:\u003c/p\u003e\u003cp\u003eL_ge36: \u0026ldquo;There was a psycho-oncology service at the clinic, which I have to praise very highly. Someone always came to see me and we were able to talk really well.\u0026rdquo;\u003c/p\u003e\u003cp\u003eD_ge48: \u0026ldquo;And that was my salvation [\u0026hellip;] She came at least once a week, sometimes twice. I always took advantage of that and still do today.\u0026rdquo;\u003c/p\u003e\u003cp\u003eE_ge51: \u0026ldquo;A psycho-oncologist was immediately assigned to me, who helped me a lot.\u0026rdquo;\u003c/p\u003e\u003cp\u003eSome participants reported difficulties or inadequacy of the service in meeting their specific needs:\u003c/p\u003e\u003cp\u003eL_ge33: \u0026ldquo;I tried that too, but it wasn\u0026rsquo;t a good fit for me [\u0026hellip;] Then there was the clinic\u0026rsquo;s pastoral care service, which was great.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;At first I tried to find a psycho-oncologist through the health insurance company. But that didn\u0026rsquo;t work out.\u0026rdquo;\u003c/p\u003e\u003cp\u003eU_it69: \u0026ldquo;The psychologist told me after two sessions that she could not follow me, my problem was not the illness but the emotional devastation I carried inside. This left me without support.\u0026rdquo;\u003c/p\u003e\u003cp\u003eSome participants complemented or replaced hospital-based support with alternative or associative approaches:\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;I then turned to an alternative practitioner who I had been seeing for Ayurvedic massage for many years.\u0026rdquo;\u003c/p\u003e\u003cp\u003eN_it44 benefited from hospital psychological support on the advice of a trusted professional she already knew: \u0026ldquo;He told me: precisely because I know you, I know that you need someone who can explain what is happening to you in order to manage it.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_sp50 preferred emotional support activities such as qi gong and online psychophysical group activities: \u0026ldquo;In my association we do not talk about the disease, we talk about emotions [\u0026hellip;] I have trained a lot in other aspects, such as chi kung.\u0026rdquo;\u003c/p\u003e\u003cp\u003eSome patients chose not to use the service at all:\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;No, it was offered to me (the psychologist) but I never managed to. Even during the first and second transplant, it was a figure I could not deal with.\u0026rdquo;\u003c/p\u003e\u003cp\u003eZ_it56: \u0026ldquo;No, even if I think maybe I could have needed it, but I am a person who has always tried to manage things on my own.\u0026rdquo;\u003c/p\u003e\u003cp\u003eWhat emerges is a complex picture in which formal psychological support is appreciated by many for its capacity for listening, reassurance, and guidance, but also shows clear limits in accessibility, subjective effectiveness, and integration with other therapeutic or associative approaches. Some patients choose to rely exclusively on their own internal resources or on alternative networks of psychological and emotional support.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec20\" class=\"Section2\"\u003e\u003ch2\u003eInformal psychological support\u003c/h2\u003e\u003cp\u003eMany patients identified family support as essential to coping with the illness, with the family often mentioned as the central figure:\u003c/p\u003e\u003cp\u003eW_sp68 had extensive daily support: \u0026ldquo;My husband, and my two daughters. Also I have a very close friend, who helps me a lot. She offered me not only to bring me here to the hospital, but also to be with me during the day and also the night.\u0026rdquo;\u003c/p\u003e\u003cp\u003eO_sp22: \u0026ldquo;Yes, the person I have talked to most about it is my mother. During the transplant admission, we spent a lot of time together without leaving the room.\u0026rdquo;\u003c/p\u003e\u003cp\u003e L_ge33: \u0026ldquo;During therapy, I met a medical assistant who took care of me [\u0026hellip;] A true friendship developed from that. [\u0026hellip;] She was a huge support for me.\u0026rdquo;\u003c/p\u003e\u003cp\u003eSome patients find great strength in spirituality and religion, which act as informal psychological support parallel to human relationships:\u003c/p\u003e\u003cp\u003eD_ge48: \u0026ldquo;I\u0026rsquo;ve always had a positive attitude towards life. And of course faith plays a role. [\u0026hellip;] My mother and the whole church prayed.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;I am a great believer and even more so now. I\u0026rsquo;ve actually always had a voice inside me that told me: You have to get through this now, but you will make it!\u0026rdquo;\u003c/p\u003e\u003cp\u003e Some participants emphasize the importance of emotional self-management and personal strategies:\u003c/p\u003e\u003cp\u003eR_ge71: \u0026ldquo;I am incredibly inquisitive and curious. I try to challenge my mind [\u0026hellip;] That\u0026rsquo;s how I try to keep my brain in motion.\u0026rdquo;\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;I\u0026rsquo;m trying to start talking about it less and less, because you can\u0026rsquo;t talk only about leukemia at home.\u0026rdquo;\u003c/p\u003e\u003cp\u003eDespite informal support generally being seen positively, some critical aspects also emerge:\u003c/p\u003e\u003cp\u003eE_ge51: \u0026ldquo;Sometimes I think, I\u0026rsquo;ll move to the north, buy a brick house somewhere by the sea, and want to know nothing from anyone.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_sp50: \u0026ldquo;I have two daughters who don\u0026rsquo;t understand what is going on (9 and 14 years old).\u0026rdquo;\u003c/p\u003e\u003cp\u003eInformal psychological support proves crucial for most patients, especially through close family members and trusted friends. This support includes concrete forms of daily help, intense emotional support, and spiritual encouragement. However, a dimension of psychological self-management also emerges, as well as evident limits when such support becomes excessively focused on the illness or insufficient to address deeper psychological needs, leading some patients to seek isolation or individual coping strategies.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e\u003ch2\u003eEmotional changes and personal redefinition\u003c/h2\u003e\u003cp\u003eThe illness often leads to profound changes in the perception of self, priorities, and interpersonal relationships, triggering processes of redefinition and personal growth:\u003c/p\u003e\u003cp\u003eN_it44 reflected on her emotional transformation after the illness: \u0026ldquo;I have become more selfish, if I want to do something now I do it without hesitation. I no longer want to waste time on things that don\u0026rsquo;t make me happy. This illness has changed me radically.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_ge52 spoke about gaining personal strength: \u0026ldquo;The illness made me stronger. I learned that I can face a lot, that I don\u0026rsquo;t have to hide or always say yes to others.\u0026rdquo;\u003c/p\u003e\u003cp\u003eE_ge51 described the complex acceptance of a new self: \u0026ldquo;Now there is a new me that I don\u0026rsquo;t know well. This creates a lot of fear because I no longer recognize my body, my identity.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese testimonies show that, beyond difficulties, the illness can open spaces for reflection and profound personal change. Emotional needs and psychological support emerge as essential elements in the experience of AML. Fear of death, anxiety about the future, and feelings of guilt toward family members are recurring themes that require adequate emotional responses. Although formal psychological support often proves lacking or discontinuous, informal support from family and healthcare staff is crucial. The illness triggers deep changes in self-perception and in the redefinition of personal priorities, underlining the need for targeted and continuous psychological interventions capable of accompanying patients through the complex pathway of emotional and biographical adaptation.\u003c/p\u003e\u003cp\u003e\u003cb\u003e5. Informal support networks and social relationships\u003c/b\u003e\u003c/p\u003e\u003cp\u003eAlongside clinical treatments and formal healthcare support, informal support networks constitute a fundamental pillar in the experience of patients with AML. Family members, friends, and broader social networks not only provide practical and logistical help but also represent a crucial emotional resource, capable of mitigating isolation and strengthening resilience. Sociological and psychological literature has highlighted how such ties significantly affect quality of life and processes of adaptation to illness (Thoits, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e2011\u003c/span\u003e; Uchino, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2009\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e Informal support takes multiple forms: from the constant presence of family caregivers, to the practical help of friends, to the social recognition that helps maintain a sense of normality and biographical continuity. In this sense, oncological illness becomes a lens through which roles and relationships are redefined: some ties are strengthened, others weaken or are interrupted, generating an overall reorganization of social networks (Wellman \u0026amp; Wortley, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e1990\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe collected testimonies clearly show that the family is often the first point of reference, guaranteeing stability and emotional protection. At the same time, the friendship and community network helps to counteract loneliness and keep patients connected with their lives before the illness. However, critical aspects also emerge, such as feelings of guilt, pressing expectations, or social isolation, which demonstrate that informal support, while vital, is also traversed by ambivalences and tensions.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec22\" class=\"Section2\"\u003e\u003ch2\u003eCrucial role of the family in the care pathway\u003c/h2\u003e\u003cp\u003eThe family frequently emerges as the first and main point of reference, providing indispensable practical and emotional support during the therapeutic pathway:\u003c/p\u003e\u003cp\u003eU_it69: \u0026ldquo;My daughter is fundamental, she supported me even when I thought I didn\u0026rsquo;t want to undergo treatment. It is thanks to her that I found the strength to continue.\u0026rdquo;\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;My husband has always been with me, he took days off work, accompanied me to the hospital every time, supporting me psychologically at every moment.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_ge28: \u0026ldquo;My family helps me with this. My sister supports me very diligently, I have three sisters and a brother, and my older sister donated her stem cells to me. Of course, I have a completely different relationship with her now. She had a baby at the time and had to stop breastfeeding so that she could donate to me. And just the fact that she did that, that she put up with it to help me, is amazing. The bond with my family has generally become stronger.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThe family represents an irreplaceable point of reference, playing a decisive role in ensuring stability and emotional security for patients.\u003c/p\u003e\u003cdiv id=\"Sec23\" class=\"Section3\"\u003e\u003ch2\u003eSupport from friends and the social network\u003c/h2\u003e\u003cp\u003eIn addition to family, friends and the wider social network often represent an important emotional and practical resource. Their support helps to counteract the social isolation generated by illness and therapies:\u003c/p\u003e\u003cp\u003eI_it41: \u0026ldquo;My friends have always been close to me, even if physically distant due to my immune restrictions. They wrote to me every day, and when they could, they came to visit me while taking proper precautions. This meant a lot to me.\u0026rdquo;\u003c/p\u003e\u003cp\u003e R_ge52: \u0026ldquo;My colleagues continuously sent me encouraging messages, they took care of my family when I couldn\u0026rsquo;t do it myself. Knowing that they were present, even from a distance, gave me incredible strength.\u0026rdquo;\u003c/p\u003e\u003cp\u003eO_sp22 emphasized how the social network helps to reduce loneliness: \u0026ldquo;My friends made video calls to me every day so I wouldn\u0026rsquo;t feel alone. It was essential because in the hospital I was isolated and felt really sad and far from everything.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThe support of friends is a vital resource for patients\u0026rsquo; emotional and social well-being, helping them to maintain a connection with life before the illness.\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec24\" class=\"Section2\"\u003e\u003ch2\u003eDifficulties and critical issues in social relationships\u003c/h2\u003e\u003cp\u003eIllness can also bring difficulties in social and family relationships, with conflictual dynamics or tensions related to the stress of the situation:\u003c/p\u003e\u003cp\u003eU_it69 expressed feelings of guilt for the suffering caused to his family: \u0026ldquo;Sometimes I feel terribly guilty, I am making many people around me suffer, especially my daughter. It is not easy to handle these feelings.\u0026rdquo;\u003c/p\u003e\u003cp\u003eG_sp67 described the emotional weight of family expectations: \u0026ldquo;My family was so worried that I almost felt obliged to always show optimism, even when I was feeling bad. It was very tiring psychologically.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_ge52: \u0026ldquo;During my therapy, I felt like a stranger at home because I could see life out of the window. And I wasn\u0026rsquo;t allowed to participate. I wasn\u0026rsquo;t allowed to have any contact with anyone. Nobody was allowed to visit me. I was basically in a parallel world.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese critical aspects highlight how illness can generate stress and tensions in social and family relationships.\u003c/p\u003e\u003cdiv id=\"Sec25\" class=\"Section3\"\u003e\u003ch2\u003eManaging social isolation\u003c/h2\u003e\u003cp\u003eHealth restrictions and immunological vulnerability force patients into isolation and significant social limitations, profoundly influencing daily life. In some cases, oncological illness frightens those who are close, leading to weakened ties.\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;Six weeks without seeing my husband, no visits allowed. Doctors entered the room wearing double masks. This isolation was psychologically very hard.\u0026rdquo;\u003c/p\u003e\u003cp\u003eI_it41: \u0026ldquo;I am alone much more often. I cannot go to crowded indoor places, I no longer go to restaurants, I avoid almost every social activity that used to be part of my daily life.\u0026rdquo;\u003c/p\u003e\u003cp\u003eR_ge71: \u0026ldquo;The illness has completely changed the relationship. On the one hand, friendships and family ties have become closer, but also the exact opposite. Friendships have dissolved or ended. And the same has also happened within the family. So, extremes in both directions.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese accounts highlight how isolation and health restrictions can negatively affect patients\u0026rsquo; psychological and social well-being, increasing the sense of loneliness and frustration.\u003c/p\u003e\u003cp\u003eInformal support networks represent a fundamental resource for AML patients, deeply influencing their ability to manage both emotionally and practically the therapeutic pathway. The family plays a central role, providing indispensable emotional and logistical support. At the same time, friends and the social network offer an important emotional and practical connection, mitigating the isolation induced by the illness. However, there are also critical issues linked to the burden of the illness on family and social relationships. It is evident that the effective management of informal relationships contributes significantly to improving patients\u0026rsquo; quality of life and resilience.\u003c/p\u003e\u003cp\u003e\u003cb\u003e6. Daily life, work, and economy\u003c/b\u003e\u003c/p\u003e\u003cp\u003eAML affects not only the clinical dimension but also produces profound transformations in daily life, work relations, and the economic condition of patients and their families. The illness experience forces a redefinition of roles, habits, and priorities, imposing a continuous negotiation between physical limitations, care needs, and the desire for normality. As shown by numerous studies on chronic and oncological diseases, the loss of autonomy and the difficulty of maintaining stable work activities generate not only tangible economic impacts but also an identity and social crisis (Charmaz, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e1991\u003c/span\u003e; Corbin \u0026amp; Strauss, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e1987\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe collected narratives highlight three main dimensions: radical changes in the management of daily activities and personal autonomy, the impact on career and professional identity, and finally, the economic difficulties connected to the indirect costs of illness. These closely intertwined dimensions contribute to defining the overall burden of AML on quality of life, showing how the illness transforms not only the body but also the social and material organization of existence.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec26\" class=\"Section3\"\u003e\u003ch2\u003eRadical changes in daily life and personal autonomy\u003c/h2\u003e\u003cp\u003eThe illness and treatments strongly influence patients\u0026rsquo; ability to carry out daily activities, generating loss of autonomy, chronic fatigue, and the need for continuous support:\u003c/p\u003e\u003cp\u003eD_ge48: \u0026ldquo;After one hour of housework I have to stop, I am exhausted, sweaty and out of breath. I can no longer maintain the same autonomy as before.\u0026rdquo;\u003c/p\u003e\u003cp\u003eE_ge51: \u0026ldquo;After being discharged from the hospital, my energy level was in the negative range, and I could barely manage my daily life.\u0026rdquo;\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;I am a bit on stand-by, I don\u0026rsquo;t know how to explain it, I am a bit stuck. I even had difficulty picking up a book and reading it, when you lack the will to concentrate.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese examples show how AML imposes a substantial redefinition of daily life, limiting personal autonomy and forcing patients to continuously negotiate with their physical abilities.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec27\" class=\"Section3\"\u003e\u003ch2\u003eImpact on work and professional identity\u003c/h2\u003e\u003cp\u003eWork emerges as an area strongly compromised by illness, generating economic difficulties, loss of professional role, and a sense of identity precariousness. However, most of the interviewees were already retired at the time of diagnosis.\u003c/p\u003e\u003cp\u003eI_it41: \u0026ldquo;I used sick leave as long as I could, then the illness allowance ended and so I could take extraordinary unpaid leave, but then we had disagreements with my employers about promises that were not kept and so I preferred to resign.\u0026rdquo;\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;No, I stopped working altogether. Also because when I was doing the monthly maintenance chemo, I couldn\u0026rsquo;t go back to work, I had frequent problems with infections like bronchitis and pneumonia.\u0026rdquo;\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec28\" class=\"Section2\"\u003e\u003ch2\u003eEconomic difficulties related to illness\u003c/h2\u003e\u003cp\u003eIllness often introduces new economic challenges, mainly due to indirect costs (since national healthcare systems generally provide patients with all drugs and therapies free of charge): travel, reduction or loss of work income.\u003c/p\u003e\u003cp\u003eV_sp70: \u0026ldquo;We have much more expenses, since my husband eats every day and every meal in the hospital\u0026rsquo;s cafeteria. Also, every time we are coming here from her town, we spend a lot of money.\u0026rdquo;\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;Even if the treatment is covered, there are significant additional expenses. AIL helped us with accommodation, but there are still daily, travel, and transport expenses that are considerable.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_ge28: \u0026ldquo;Financially, it\u0026rsquo;s a complete challenge, even just the doctor\u0026rsquo;s appointments. They are difficult for me to attend. I can never get there on my own, it\u0026rsquo;s very exhausting for me. So I have to take a cab. I like driving, but I don\u0026rsquo;t have the confidence to do it on my own. I lack concentration and stamina. You have to keep track of all this medication and you have a lot of paperwork to do. The costs involved are sometimes really unimaginable. You don\u0026rsquo;t expect that. I never thought I would get cancer at 27.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese testimonies underline how the economic aspect represents an additional source of stress, further aggravating the complexity of illness and influencing patients\u0026rsquo; ability to cope serenely with the therapeutic pathway. AML deeply affects daily life, work activity, and the economic condition of patients. Physical changes and chronic fatigue strongly limit autonomy, making even the simplest daily activities difficult. The loss or suspension of work activity generates not only concrete economic problems but also a significant psychological impact on the perception of one\u0026rsquo;s identity and social usefulness. Despite these difficulties, there also emerges a capacity for adaptation and personal redefinition, which allows patients to establish new balances, new priorities, and to develop effective coping strategies.\u003c/p\u003e\u003cp\u003e\u003cb\u003e7. Existential, spiritual dimension and confrontation with death\u003c/b\u003e\u003c/p\u003e\u003cp\u003eAML does not only affect the body but also deeply impacts the existential dimension of those affected. The sudden irruption of the disease and the constant threat of death generate what Frank (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e1995\u003c/span\u003e) defines as an illness narrative capable of disrupting the consolidated meanings of existence and imposing a redefinition of life\u0026rsquo;s sense. The confrontation with one\u0026rsquo;s own mortality represents a traumatic passage, often experienced as a \u0026ldquo;biographical limit\u0026rdquo; that forces the re-elaboration of priorities, relationships, and identity (Becker, \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1973\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe collected testimonies show how the diagnosis of AML inevitably opens up radical questions about living and dying, giving voice to deep fears, feelings of anguish, and perceptions of precariousness. Alongside this experience of vulnerability, however, inner and spiritual resources also emerge: for some, religion or faith; for others, meditative, philosophical, or introspective practices that offer support and possibilities for resilience. In this sense, illness is configured not only as a crisis but also as an opportunity for transformation, in which patients re-elaborate the boundaries of their identity and rediscover new existential meanings.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec29\" class=\"Section2\"\u003e\u003ch2\u003eDirect confrontation with death and fear of the end\u003c/h2\u003e\u003cp\u003eThe diagnosis of AML immediately brings patients into a direct and often traumatic confrontation with the possibility of death, generating profound feelings of fear and anguish:\u003c/p\u003e\u003cp\u003eR_ge66: \u0026ldquo;I think death has become more real. In the past, people tended to try to push the topic away or not think about it. Because it was still so far away. That\u0026rsquo;s different now. In March, my mother-in-law died at over 90 and a neighbor at well over 80. That really hit me hard. I thought: that could have been me too.\u0026rdquo;\u003c/p\u003e\u003cp\u003eB_it75: \u0026ldquo;I just hope that when it comes it doesn\u0026rsquo;t make me suffer too much. Maybe if one falls asleep and doesn\u0026rsquo;t wake up, that would be the best thing of all.\u0026rdquo;\u003c/p\u003e\u003cp\u003eO_sp22: \u0026ldquo;I am worried about dying. My hair falling out, getting thinner, all that doesn\u0026rsquo;t worry me, because I see that it\u0026rsquo;s reversible, but dying does worry me. Not depression, maybe anxiety, and sometimes I feel unhappy. When the lights go out in the hospital and everything goes quiet, my head spins.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese examples underline how the immediate confrontation with mortality represents a profound and inevitable emotional shock, marking patients\u0026rsquo; existential journey.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eSpirituality and inner resources\u003c/h3\u003e\n\u003cp\u003eThe spiritual dimension emerges as a significant resource for some patients, who find support and comfort in spiritual or religious practices, while others develop alternative inner resources:\u003c/p\u003e\u003cp\u003eL_ge36: \u0026ldquo;Yes, I am totally spiritual, especially during the illness and in my healing phase. I meditated every day, did a lot of yoga, and I delved deep into finding an answer for why I became ill and why, especially, a second time. I found many answers for myself. It strengthened or intensified me. I am not religious, nor did I grow up religious. But I strongly believe that the universe is a higher power, that the sun conveys a lot of strength and energy, and that everything happens as it must be.\u0026rdquo;\u003c/p\u003e\u003cp\u003eG_sp67: \u0026ldquo;About myself. I am very spiritual. That is why I have an inner strength. Spiritual strength is related to people and feelings. I love the people around me, and I usually show it to them.\u0026rdquo;\u003c/p\u003e\u003cp\u003eV_sp50: \u0026ldquo;I meditate a lot, and I do a lot of self-inquiry, and I always try to look forward. Let them out and try to relax. Chi kung is very relaxing, and that helps control emotions. I feel good (I have felt good throughout the process), and I think that in part it is because I work hard on my emotions.\u0026rdquo;\u003c/p\u003e\u003cp\u003eSpirituality, understood in a broad sense, can represent a fundamental resource for facing the emotional and existential difficulties related to illness.\u003c/p\u003e\u003cdiv id=\"Sec31\" class=\"Section2\"\u003e\u003ch2\u003eAcceptance, resilience, and realistic confrontation with death\u003c/h2\u003e\u003cp\u003eIn the course of the illness, some patients develop a progressive acceptance of the reality of the disease and the possibility of death, accompanied by coping strategies that allow them to face the future with greater serenity:\u003c/p\u003e\u003cp\u003eC_it45: \u0026ldquo;After the first very hard blow, I understood that I had to move forward. I stopped crying, I accepted that the illness was part of my life and I decided to face it.\u0026rdquo;\u003c/p\u003e\u003cp\u003eL_ge33: \u0026ldquo;Well, I have to say, sometimes I find it difficult. It\u0026rsquo;s particularly difficult mentally because my life plan was different and everything has changed as a result of the illness. And I still go to psychotherapy regularly. I\u0026rsquo;m also working on all these issues, but I had really hoped that after two years, after the end of therapy, I would have noticed significant improvements.\u0026rdquo;\u003c/p\u003e\u003cp\u003eZ_it56: \u0026ldquo;I still tried a bit to joke with my family, to play it down, but now fortunately I managed to get into the mindset of what I have to do.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThe existential and spiritual dimension and the direct confrontation with death represent a central aspect of the experience of patients with AML. The traumatic impact of the diagnosis leads to a profound existential crisis, characterized by fear and anguish about one\u0026rsquo;s mortality. However, over time, many patients process this confrontation by developing new personal awareness, redefining their priorities, and discovering unexpected spiritual and inner resources. These processes often lead to a significant identity transformation, where the meaning of life and death is radically and profoundly redefined. The ability to develop resilience and to find alternative meanings represents a crucial element for positively facing the therapeutic pathway, underlining the importance of specific and targeted psychological and existential support, capable of accompanying patients in these delicate personal transitions.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec32\" class=\"Section2\"\u003e\u003ch2\u003eResults of the Living Labs with family caregivers\u003c/h2\u003e\u003cp\u003eIn the Living Lab dedicated to caregivers, conducted through the World Caf\u0026eacute; Method, the discussions brought out a set of central dimensions of the care experience.\u003c/p\u003e\u003cp\u003eA first theme concerns daily practices and the organization of care work: caregivers take on a role that goes far beyond occasional support, amounting to an ongoing responsibility that involves planning, constant monitoring, and management of therapies, with characteristics comparable to those of a real job. This resonates with recent findings from a global study on leukemia caregiving (Oliva et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2025\u003c/span\u003e), where 90% of family members reported providing emotional support and over 80% were involved in daily practical tasks such as transportation, household chores, and financial management. These results confirm that leukemia caregiving constitutes an all-encompassing, time-intensive activity that requires continuous coordination and adaptation.\u003c/p\u003e\u003cp\u003eA second aspect concerns the relationship with healthcare professionals. The doctor\u0026ndash;patient relationship is perceived as being based on trust and esteem, to the point that caregivers tend to delegate a significant part of therapeutic decisions to hematologists, recognizing both the quality of clinical care and the value of relational support. At the same time, the caregiving experience is characterized by a strong emotional investment. Caregivers report experiencing continuous emotional labor aimed at supporting the patient in moments of vulnerability, mediating family tensions, and maintaining an affective balance in a context marked by the uncertainty of illness. Consistently, Oliva et al. (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2025\u003c/span\u003e) highlight that caregivers of AML patients experience the highest psychological burden among leukemia subtypes, with significantly elevated scores in emotional-behavioral domains (EB\u0026thinsp;=\u0026thinsp;19.7\u0026thinsp;\u0026plusmn;\u0026thinsp;16.6), confirming that emotional distress and fatigue are pervasive.\u003c/p\u003e\u003cp\u003eThe need to care for a family member also entails a profound reorganization of daily and working life. Schedules, priorities, and personal spaces are redefined, with direct impacts on the professional sphere and the management of leisure time, sometimes mitigated by access to legal instruments such as work leave. These results align with the same study, which reports that one-third of caregivers (34%) had to reduce working hours or leave employment, and nearly half (48%) experienced financial strain due to care responsibilities.\u003c/p\u003e\u003cp\u003eThe psychological impact is another critical element. Anxiety, guilt, constant worry, and reduced subjective well-being emerge as recurring consequences of the diagnosis and therapeutic pathway. The patient\u0026ndash;caregiver relationship proves to be ambivalent: while mutual protection and solidarity prevail on the one hand, on the other, difficulties in communicating needs and emotions are recorded, which can generate tensions and misunderstandings. Illness also acts as a factor in restructuring family ties, reactivating pre-existing dynamics and imposing a redefinition of roles. Finally, logistical and economic difficulties\u0026mdash;related to transportation, waiting times, and indirect costs\u0026mdash;constitute an additional aggravating factor of the caregiving burden.\u003c/p\u003e\u003cp\u003eOverall, the results show how the caregiving experience in the onco-hematological field is configured as a complex interweaving of material work, emotional commitment, biographical redefinition, and relational restructuring, with significant repercussions on the caregivers\u0026rsquo; quality of life. This multidimensional burden, as shown in Oliva et al. (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2025\u003c/span\u003e), calls for integrated psychosocial and organizational support strategies that address the needs of both patients and caregivers throughout the disease trajectory.\u003c/p\u003e\u003cp\u003eIn the Living Lab with healthcare professionals, conducted through the Nominal Group Technique, the physicians\u0026rsquo; perspective on the needs of patients with AML and their caregivers was explored, as well as on the critical issues and potential of the therapeutic pathway, including experimental therapies.\u003c/p\u003e\u003cdiv id=\"Sec33\" class=\"Section3\"\u003e\u003ch2\u003eResults of the Living Labs with medical experts\u003c/h2\u003e\u003cp\u003eProfessionals emphasized the value of clear and empathetic communication, considered crucial to ensuring understanding, adherence, and active patient involvement. The literature confirms that effective communication improves the perceived quality of care and the therapeutic alliance, reducing anxiety and uncertainty (Epstein \u0026amp; Street, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2007\u003c/span\u003e; Butow et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2012\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe importance of preserving social ties with family and friends was also highlighted, recognized as a fundamental safeguard of psychological well-being (Northouse et al., \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e2012\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eDoctors recognize their role not only as care specialists but also as psychological points of reference, entrusted with the confidence of patients and families. In line with previous studies, the value of including patients in therapeutic decisions was reiterated, promoting models of shared decision-making that strengthen autonomy and agency (Elwyn et al., \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2012\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn the home care context, the need to maintain a constant flow of communication with healthcare facilities was reported, along with a growing need for reassurance\u0026mdash;factors that the literature identifies as central in the management of chronic oncological diseases (Street et al., \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e2009\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAn important theme concerned experimental therapies, perceived as innovative tools but often presented as a \u0026ldquo;last resort.\u0026rdquo; The complexity of these therapeutic options makes a high level of trust and accurate communication indispensable, elements that recent studies highlight as particularly delicate in oncological clinical trials (Joffe et al., \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2017\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eFinally, physicians reflected on the needs of caregivers, often seeking practical, logistical, and bureaucratic information to navigate care pathways. The fundamental role of community services was emphasized, while also acknowledging their high regional heterogeneity. Among the critical issues, difficulties in accessing certain forms of intermediate care, such as physiotherapy, emerged, where the presence of an oncological diagnosis continues to represent a factor of exclusion or resistance, confirming the stigma that still accompanies oncological illness (Else-Quest \u0026amp; Jackson, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2014\u003c/span\u003e).\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThis study shows that the quality of life (QoL) of patients with AML cannot be reduced to a clinical or symptomatic dimension, but rather represents a multidimensional construct that integrates physical, psychological, relational, social, and economic aspects. Consistent with the literature on HRQoL (WHOQOL Group, \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e1995\u003c/span\u003e; Fayers \u0026amp; Machin, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2016\u003c/span\u003e; Haraldstad et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2019\u003c/span\u003e), our findings highlight how the diagnosis and treatment of AML constitute a form of biographical disruption (Bury, 1982), requiring continuous processes of adjustment and reorganization (Corbin \u0026amp; Strauss, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e1987\u003c/span\u003e; Charmaz, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e1991\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eA first domain concerns communication and trust in the physician\u0026ndash;patient relationship. Clear, empathetic, and consistent communication emerged as crucial not only for understanding treatment pathways but also for reducing uncertainty and distress. This finding resonates with previous research showing how patient-centered communication directly affects adherence, psychological well-being, and perceived quality of life (Epstein \u0026amp; Street, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2007\u003c/span\u003e; Butow et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2012\u003c/span\u003e). In the case of experimental therapies - often perceived as a \u0026ldquo;last option\u0026rdquo; - trust in the medical team becomes a prerequisite for engagement, echoing evidence on the challenges of informed consent in oncology trials (Joffe et al., \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2017\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eA second domain is informal and social support. Family members and friends represent an indispensable resource for patients, providing both practical and emotional support. This confirms prior evidence that social ties enhance resilience, coping, and health outcomes (Thoits, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e2011\u003c/span\u003e; Uchino, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2009\u003c/span\u003e). Yet, our findings also reveal ambivalence: alongside protection and reassurance, caregivers report anxiety, guilt, and relational tensions, highlighting the hidden emotional and organizational burden of caregiving (Northouse et al., \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e2012\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eA third dimension is the emotional and existential impact of AML. Fear of death, anxiety about relapse, and concerns for loved ones are recurring themes. At the same time, some patients reframe their experience by mobilizing spiritual resources or alternative forms of meaning-making. In line with Frank\u0026rsquo;s (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e1995\u003c/span\u003e) idea of the \u0026ldquo;wounded storyteller,\u0026rdquo; AML patients often rearticulate their identity and life priorities through the confrontation with mortality. These findings point to the need for systematic integration of psycho-oncological and existential care into treatment pathways (Holland \u0026amp; Weiss, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2010\u003c/span\u003e; NCCN, 2024).\u003c/p\u003e\u003cp\u003eFinally, the results highlight the logistical and economic burden associated with AML. Even in contexts where pharmacological treatments are covered by public health systems, indirect costs (travel, accommodation, loss of income) significantly affect patients and families. These findings echo earlier studies on how chronic illness reshapes daily life, roles, and social identities (Charmaz, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e1991\u003c/span\u003e), and reinforce the importance of formal support structures such as patient associations, accommodation facilities, and local welfare services.\u003c/p\u003e\u003cp\u003eOverall, our findings suggest that QoL in AML results from the intersection of clinical and extra-clinical factors. Treatment success cannot be evaluated without considering emotional well-being, relational resources, social and economic constraints, and existential meanings.\u003c/p\u003e"},{"header":"LIMITATIONS","content":"\u003cp\u003eThis study has some limitations. First, the qualitative design and the relatively small sample size do not allow for statistical generalization of the findings. The narratives were collected in three European countries, which may limit transferability to other cultural or healthcare contexts. In addition, most participants were in remission at the time of the interview, which may have influenced how they reflected on their experiences compared with those undergoing acute treatment. Finally, while the Living Labs enriched the analysis by incorporating caregivers\u0026rsquo; and professionals\u0026rsquo; perspectives, the number of participants was limited, and the results should therefore be considered exploratory. Despite these limitations, the study provides valuable insights into the lived experiences of AML patients and their caregivers, highlighting aspects of quality of life that are often overlooked in clinical research.\u003c/p\u003e"},{"header":"CONCLUSION","content":"\u003cp\u003eThis study confirms that Acute Myeloid Leukemia (AML) profoundly affects patients\u0026rsquo; quality of life, extending far beyond the biomedical dimension to encompass everyday routines, family relations, and existential concerns. Patients\u0026rsquo; narratives reveal how physical symptoms, psychological distress, and economic challenges intertwine with the reorganization of social and family roles, producing a constant negotiation between vulnerability and the pursuit of normality. Within this landscape, informal caregivers emerge as indispensable co-producers of care, bearing an invisible yet substantial emotional, organizational, and economic load that requires systematic acknowledgment and structured support.\u003c/p\u003e\u003cp\u003eRecent evidence reinforces this perspective. Oliva et al. (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2025\u003c/span\u003e) have shown that family members of leukemia patients experience significant emotional and psychosocial strain, with caregivers of AML patients reporting the highest levels of psychological burden and disruptions in daily and professional life. Similarly, Mott et al. (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e2024\u003c/span\u003e) highlight how patients\u0026rsquo; treatment preferences are not limited to clinical efficacy but include concerns for quality of life, treatment convenience, and the possibility of maintaining personal agency throughout the therapeutic journey. Together, these studies underscore that the meaning of \u0026ldquo;treatment success\u0026rdquo; must integrate both clinical outcomes and lived experiences.\u003c/p\u003e\u003cp\u003eFrom a clinical standpoint, these findings stress the need to embed empathetic and transparent communication, psycho-oncological care, and supportive infrastructures throughout the treatment pathway. In line with the broader literature on patient preferences, fostering spaces for shared decision-making and psychosocial support can mitigate distress and strengthen patient and caregiver engagement.\u003c/p\u003e\u003cp\u003eFrom a policy perspective, improving quality of life for AML patients and their caregivers demands investments that transcend pharmacological innovation. Community-based services, flexible work arrangements, and economic support mechanisms are essential to offset the hidden costs of illness. Formal recognition of caregiving roles\u0026mdash;both at the institutional and policy levels\u0026mdash;would also contribute to a more equitable and sustainable care system.\u003c/p\u003e\u003cp\u003eFinally, future research should expand to different socio-cultural contexts and explore survivorship trajectories, with particular attention to the social reconstruction of daily life after treatment. Interventions aimed at fostering resilience, relational balance, and participation can play a decisive role in promoting a patient- and family-centered approach to quality of life.\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003eFunding information:\u003c/h2\u003e\u003cp\u003eThis research was conducted within the IMPACT-AML project, funded by the European Union\u0026rsquo;s Horizon Europe Research and Innovation Programme (HORIZON-MISS-2022-CANCER-01) under Grant Agreement No. 101104421.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eElisa Castellaccio conceived the study, conducted the qualitative data analysis, and drafted the main manuscript text. Samantha Nier provided supervision throughout the research process and critically revised the manuscript, strengthening the theoretical framing. Giovanni Martinelli contributed to the interpretation of findings, particularly enhancing the data analysis sections, and critically reviewed the entire manuscript. All authors read and approved the final version of the manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThis study was carried out within the IMPACT-AML project. The authors would like to express their sincere gratitude to Antonio Maturo, Giovanni Marconi and Gerardo Musuraca for their clinical support and guidance throughout the research process. We warmly thank Simone Adelsbach, Martina Vittoria Minguzzi, and Maria Belles Esteller for their essential contribution to the design and conduct of the interviews.We are also grateful to Chiara Zingaretti and Federica Campacci for their valuable support in participant recruitment. Our deepest appreciation goes to all patients, family caregivers, and healthcare professionals who generously shared their experiences through interviews and Living Labs, making this study possible.Finally, we thank all partners of the IMPACT-AML consortium for their continuous collaboration and insightful feedback during the development of this work.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBecker, E. (1973). \u003cem\u003eThe Denial of Death\u003c/em\u003e. Free.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBensing, J. (2000). Bridging the gap. The separate worlds of evidence-based medicine and patient-centered medicine. \u003cem\u003ePatient Education and Counseling\u003c/em\u003e, \u003cem\u003e39\u003c/em\u003e(1), 17\u0026ndash;25.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBowling, A. (2005). \u003cem\u003eMeasuring health. Third\u003c/em\u003e. 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Chronic illness as biographical disruption or biographical disruption as chronic illness? \u003cem\u003eSociology of Health \u0026amp; Illness\u003c/em\u003e, \u003cem\u003e22\u003c/em\u003e(1), 40\u0026ndash;67.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Footnotes","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAIL Forl\u0026igrave;-Cesena is the Italian Association against Leukemia, Lymphoma and Myeloma, which works to help cover the costs of scientific research on leukemia, lymphoma, myeloma, and other hematologic diseases. It also supports the organization and improvement of socio-health services and assistance for people affected by hematologic disorders and their families, pursuing the objectives set out in Article 4 of the National AIL Statute.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003e AIL accommodation facilities are housing structures provided by the Italian Association against Leukemia, Lymphoma and Myeloma (AIL) to offer free or low-cost temporary accommodation to patients and their families during treatment periods. These facilities, usually located near hospitals or hematology centers, aim to reduce the logistical and financial burden associated with frequent travel and prolonged hospital stays, while fostering proximity between patients, caregivers, and healthcare services.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Quality of Life (QoL), Acute Myeloid Leukemia (AML), Patient and Caregiver Experience, Psycho-social Support","lastPublishedDoi":"10.21203/rs.3.rs-8212442/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8212442/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eThis qualitative study explores how Acute Myeloid Leukemia (AML) affects patients\u0026rsquo; quality of life (QoL) across clinical, social, emotional, and existential dimensions. Based on 26 narrative interviews with patients in Italy, Germany, and Spain, and two Living Labs involving family caregivers and healthcare professionals, the research investigates how illness disrupts everyday life and how individuals negotiate vulnerability and normality. The findings reveal that QoL in AML is shaped by four key domains: (1) communication and trust in the doctor\u0026ndash;patient relationship, which influence understanding, adherence, and emotional well-being; (2) the role of informal and social support networks, which provide essential practical and emotional assistance but also generate ambivalent burdens for caregivers; (3) the emotional and existential challenges related to fear, uncertainty, and identity redefinition; and (4) the economic and organizational implications of the care pathway. Across narratives, patients and caregivers appear as active co-producers of care, mobilizing personal, relational, and spiritual resources to preserve meaning and continuity in life. The study argues that improving QoL in AML requires integrating psycho-oncological care, empathetic communication, and formal support systems within treatment pathways, alongside policy measures recognizing the invisible labor of family caregivers. These insights contribute to advancing person- and family-centered approaches to quality of life in hematological care.\u003c/p\u003e","manuscriptTitle":"Bridging Clinical Care and Everyday Life: Insights on Quality of Life in Acute Myeloid Leukemia","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-12-04 12:37:22","doi":"10.21203/rs.3.rs-8212442/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"6df8cd9b-1b05-4bb2-be27-6edf67581916","owner":[],"postedDate":"December 4th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-04-17T18:25:03+00:00","versionOfRecord":[],"versionCreatedAt":"2025-12-04 12:37:22","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8212442","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8212442","identity":"rs-8212442","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}