Patients’ Perspective and Utility of Self-narrative Biographies in the Kidney Transplantation Path: a Pilot Study

Patients’ Perspective and Utility of Self-narrative Biographies in the Kidney Transplantation Path: a Pilot Study | 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 Article Patients’ Perspective and Utility of Self-narrative Biographies in the Kidney Transplantation Path: a Pilot Study Marika Morabito, Linda Liepa, Federica Masci, Marta Ripamonti, and 8 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6159394/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 Waiting for a transplant correlates with trepidation, emotional distress, a sense of guilt and grief toward the deceased donor, anxiety, and even depression. Then, patients must cope with uncertainty and fear about outcomes and changes in personal identity. Aim of this study was to gather patients' perspectives on significant moments in their transplant journey. Face-to-face and semi-structured interviews were conducted with KTRs from 2020–2021 about (1) waiting-list-period; (2) impact of the transplant on their daily activity; (3) out-of-hospital routine; (4) life changes; (5) self-narrative biography utility. Participants mentioned highly emotional moments, a theme of uncertainty about the outcome emerged and most KTRs reported that sharing their own story normalizes, allows comparisons with others, and relieves the feeling of loneliness; hearing others' narratives appears as a way of gaining knowledge different from the medical standpoint. Transplant experience is characterized by a non-linear timeline different from the chronological steps foreseen by the medical procedure, overlooked as a "healing moment". Use of creative activities in health care situations can empower people and increase their well-being allowing emotional release. Due to some limitations (hyper-selected patients, monocentric experience), more research is needed to study the impact of forms of storytelling as an intervention. Biological sciences/Psychology Health sciences/Health care Health sciences/Medical research Health sciences/Medical research/Outcomes research kidney transplant patients’ perspective self-narrative interview sharing experience lifestyle changes INTRODUCTION Chronic kidney disease (CDK) is a progressive condition, defined by a reduced glomerular filtration rate (GFR), divided into five stages, from normal kidney function to evidence of kidney disease. Due to the rising prevalence of obesity, diabetes and hypertension, in addition to the progressive aging of this population, CKD represents a major public health problem, labeled with increasing morbidity burden, high rates of mortality and severely impaired Quality of Life (QOL). [ 1 , 2 ] As patients proceed through the stages of CKD, there is a marked increase in symptoms like anemia and fatigue, and complications like cardiovascular disease, bone and mineral disorders and even mental health conditions (such as depression and anxiety). Therefore, patients’ exigencies modify along the disease progression through its various stages, forging the CDK’s management as a unique challenge [ 3 ]. Kidney transplantation (KT) is nowadays the best establish treatment for end stage renal disease (ESRD) as it is associated with improved QOL, decreased morbidity and mortality, not including the more cost-effectiveness compared to dialysis [ 4 ], but it doesn’t come without problems. Either symptom of ESRD, dietary and adjustment of daily habits, and renal replacement therapies (RRT), are highly invasive. Frequently, psychosocial distress is underdiagnosed and undertreated, further increasing morbidity and disease burden for these subjects. [ 2 , 4 ] Narrative Medicine was developed about 30 years ago with the aim of collecting and interpreting information on the patient's experience of illness as a tool for daily medical practice. The writing process is not interpreted as simply a narrative against forgetting or a solipsistic diary but shifts the treatment into a healing conversation between patient and physician, so that the interpenetration of self and other is seen within the observation site itself. [ 5 ] Many authors have suggested that any disease constitutes a perturbation, a non-normative transition of life that requires the individual to work to restore its balance. The presence of a chronic disease triggers the need to reconstruct one's history by linking the past life with the present experience of the disease. In this context, the narrative becomes an opportunity to give voice to the rupture and structure it in a time frame not separated from other life events that are part of the individual's autobiographical story. The application of this tool is recognized in the oncological field, where expressive writing has been shown to have a significant effect on the reduction of negative somatic symptoms. [ 6 , 7 ] There is growing recognition that patient-reported outcome measures (PROMs) are important for assessing the effectiveness of health care. [ 8 ] Patient-reported measures can be classified into two different categories depending on whether they relate to perception of health status (PRO), or experience of care received (PRE). The related instruments designed to measure such perceptions are therefore labeled PROMs or PREMs, respectively. [ 2 , 9 ] A PROM describes information directly perceived and reported by the individual about their health or treatment, without it being reprocessed by anyone else, including physicians and researchers [ 10 ]. Examples of PROs include health-related quality of life (HRQoL), ability to perform daily activities and work, disease-related symptomatology, any side effects of treatment, and adherence to treatment. A PROM is a standardized quantitative assessment that captures the impact of all these aspects as perceived by the patient. Studies involving kidney transplants rarely report PROMs, although regulatory agencies increasingly support their inclusion, as these would help identify outcomes that are important to individuals, beyond the study hypothesis itself. Among the various PROMs, the following have been proposed as possible to be included in the RCTs: participation in life; medication adherence; symptoms and side effects. [ 11 ] Specific examples are the Kidney Disease Quality of Life Instrument (KDQoL) [ 12 ] and the Gastrointestinal Symptom Rating Scale (GSRS). [ 13 ] The use of PROMs during clinical encounters provides an opportunity for patients to disclose physical or psychosocial concerns that impact their daily life, aspects not always addressed by the healthcare team. They also enable the team to expertly quantify preponderant components in chronic disease such as symptom burden and HRQOL. The integration of PROMs into medical practice has the potential to improve disease burden assessment and to understand population-level care needs. [ 2 , 14 ] Patient perspectives on self-management, which might explain adherence and other Patients' views on self-management, which might explain whether they adhere to therapy, are still the subject of many questions. Qualitative studies can allow a better understanding of the beliefs and knowledge that influence the behaviors and choices in self-management of transplant recipients. [ 11 ] Many studies focus on analyzing a specific task, however, investigating self-management as a multidimensional construct that includes all patient behaviors and thoughts could provide more comprehensive information. Five broad areas were identified that reflect kidney transplant patients' views on self-management: empowerment through autonomy, prevalent fear of consequences, burdensome care and responsibilities, over-medicalization of life, social responsibility, and motivation (including demonstration of gratitude towards the medical team and debt towards the donor). [ 15 ] The main object of this study was to demonstrate how autobiographical narration, as self-expression and recognition of one's own person, among the techniques of Narrative Medicine, can be an element of support for the patient, as the care of the spirit and psychological well-being participate in the overall health of the person, being able to become this activity, moreover, a therapeutic tool useful to the medical and surgical team for taking charge of the patient, improving therapeutic compliance and establishing a closer relationship of trust between doctor and patient. PATIENTS AND METHODS Study design, participants, and procedures Varese’s Transplant Surgery Operating Unit has been active since 1996. To date, it has more than 1000 kidney transplants to its credit, making it one of the main national reference points in the field of kidney transplantation in northern Italy. It has always been essential for us to pay careful attention so that the hope of being able to undergo a kidney transplant is guaranteed, also, to those who must be categorized as a "fragile patient". From this way of thinking, following the thought expressed in Charon's Narrative Medicine and in the studies conducted by Pennebaker on the power of writing as a therapeutic tool, this pilot project was born, based on a sample of 18 patients, of different ages and sexes, transplanted in the two-year period 2020-2021, who were administered an indirect questionnaire with semi-structured questions, released following a cognitive meeting with the figure of the Professional Educator (whose task would have been to administer the interviews as external personnel and not already directly involved in the patient's care process) and part of the surgical team, carried out inside the hospital in the spaces now familiar to the patients, with the idea that this could put them at ease. The purpose of the questionnaire was to investigate, briefly, the experiences related to the pre-and post-transplant period, through open and simple questions that leave everyone the freedom to be able to express themselves according to their own desire and therefore not having to select from a series of possibilities pre-established by the figure of the clinician (as envisaged in many PROMs), and furthermore, the possible adherence to future meetings of autobiographical narration by patients. Inclusion criteria were therefore: patients of both sexes, adults (>18 years), who underwent kidney transplant in the two-year period 2020-2021 from DBD/DCD, who had not developed rejection. Conversely, exclusion criteria were transplant received in previous years or too close to the interview, LDKT, rejection episode, and non-native-Italian speakers. Since this is a pilot project, we decided to standardize the sample as much as possible, momentarily excluding patients with living donors, in the idea that the emotional experience is very different in the two situations, with the intention of being able to expand the proposal if the results obtained would be promising and after gaining adequate experience in the matter. For a similar reason, only Italian mother-tongue patients were included as the project would have been based on the narration and expression of their own experiences, consequently, even a minimal language barrier could have represented an obstacle or even an evaluation bias in this preliminary phase. Finally, the selected time frame would have allowed us to evaluate the patients during the first year from the moment of surgery, i.e. the period of time in which outpatient monitoring visits are most frequent, under the assumption that these could represent the moment of greatest emotional load. The setting of the interview saw the subdivision into three large macro-areas (pre-transplant period, intervention and post-transplant, evaluation of the treatment proposal), with further articulation of the analysis of the moment relating to the peri-intervention: • Experience related to the period prior to the organ transplant 1. When you were on the kidney transplant waiting list, what were your predominant emotions and feelings? • Experience related to the post-organ transplant period 2. In the period following the organ transplant, how have your life and routine changed? 3. How did you feel / do you feel about the periodic admission to the hospital and the frequent post-transplant visits? 4. How would you currently describe your life following the surgery? • The intervention proposal 5. If within the hospital there was the possibility of carrying out (periodically) individual/group autobiography meetings (with other renal transplant patients), as a support and treatment tool to complement the checks already foreseen, would you use it? RESULTS Descriptive Findings From the answers to the questionnaire proposed to the patients it emerged (Table 1): Table 1. Descriptive findings: selected quotes Theme Illustrative selected quotes Waiting list “I cried with joy when I got the call to show up at the hospital for the transplant.” “After all the exams and ranking I was over the moon, I saw the light at the end of the tunnel. Then the months start to pass and then a year the joy starts to turn into a nerve-wracking anticipation. Soon after the panic attacks begin... what if they never call me?” “My emotions after being listed were a mix of fear, anxiety and not feeling ready.” After transplant "After the transplant I came back to life and felt like a normal person again." "Slowly I felt better and better, full of strength. My body began to give the right answers to my desire to do". "In the early days I lived with the fear of rejection and I was careful of everything, I didn't exaggerate in my daily routine and I promised myself to live my life much more peacefully, having received a gift". “The change was immediately evident given that I no longer did dialysis, being busy three days a week in the hospital away from my family for almost 5 years had a huge impact on my life and not having to do it anymore gave me back a presence in the family that has been missing for too long.” Outpatient checkups "I knew they were necessary for my health even though I have to say I often came home tired." "The first few months didn't go well and I was looking forward to visits to see if there was anything new either way." "I have always felt serene and confident also because I was aware of the preparation and competence of the medical staff who have been following me for years and who had already saved my life in the past". Current life description "Now my life is mine. I'm in control of my time again and this gives me an enormous emotional boost." "I see everything around me from another perspective, without pessimism." Considerations about self-narratives and creative activities as a therapy "I think everyone needs a word of support, a voice out of the chorus, which gives meaning to so many things that, seen from our point of view, cannot be explained". "We need to share our own story with others who are in the same condition to help those who are less strong to say: you're not alone." during the waiting list period preceding the transplant, the predominant emotions were found to be anxiety, fear, uncertainty, but also hope, joy and desire regarding the experience relating to the peri-surgery period: - from the question relating to the post-surgery phase , predominant was the sensation of having regained possession of one's life and having returned to life without the constraints of dialysis, despite the attention paid to interpreting the signals given by one's body and the daily actions that can be "afforded" remained high - regarding outpatient check-ups , the dominant emotions seemed to be anxiety and fear for the possibility of negative news, a sense of expectation and the persistence of an inseparable bond with the disease - in relation to the current sensations regarding life after the transplant , the importance and beauty of the acquired normality and serenity stood out, together with the sense of re-appropriation of one's life. However, a minority has contextually highlighted the persistence of concern and uncertainty due to the ever-present possibility of adverse events lastly, the opinion regarding the proposal to include the narration within the treatment path and the perceived effectiveness of this treatment was investigated: many expressed themselves positively, considering it a useful tool above all to accompany the recipients in the immediate period after the transplant, also from the patient's entry on the waiting list, given the emotional load full of anxiety and fear of the same, recognizing the merits of the support function precisely in the act of sharing with peers who have faced a similar path, both in listening and storytelling mode. DISCUSSION Scientific evidence demonstrates that Narrative Medicine is a useful tool for evaluating patients' experience of illness. Recognition of its role in daily medical practice could enrich clinical information by focusing on the needs and critical aspects of patients' lives, influencing their normal therapeutic pathway. It is essential to understand that each disease and each patient is associated with different physical and psychological experiences, presenting a distinct individual treatment pathway. Narrative Medicine participates in a wider cultural change, emphasizing the importance of the humanization of treatments and the personalization of medicine, built on the individual experience, history and needs of each patient. [6] Centering care on patients' experience could also provide them with accountability by enabling them to play a key role in the design and management of their care, while also playing a considerable role in prognosis [14, 16, 17]. Taking a more holistic approach than traditional models of care promise the patient a better experience of their disease [2, 9]. There is limited information on the economic implications such as health care costs and possible loss of wages. Further research should ideally aim at developing multidisciplinary management strategies that draw on patient experiences, with the overall goal of improving individuals' lives after transplantation. Since each disease has its own characteristics, a proven tool for one type of organ transplant may not necessarily be valid for another. In order to improve clinical practice, enhance patients' autonomy and ability to cope with possible complications, minimize therapeutic fatigue, and support patient decision-making, more research is needed to validate the efficacy of narrative medicine's narrative in the context of kidney transplantation. There are some potential limitations to this study: selection bias may have occurred given the qualitative study design. Declarations Acknowledgments: The authors are also grateful to the patients who have provided personal communications for inclusion in this article. Funding : This research received no external funding. Human Ethics Approval Statement : The study was conducted per the Declaration of Helsinki. Due to its nature and according to local law, this study was approved by the Ethical Committee of the University of Insubria (protocol no. 0119180, 19 October 2023). Informed Consent Participation Statement : Informed consent was obtained from all subjects involved in the study. Informed Consent Publication Statement : Not applicable. Data Availability Statement : The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request. Conflicts of Interest : The authors declare no conflicts of interest. AUTHORS CONTRIBUTION MM and MP were independently involved in the conception of the interview. MM performed a critical review of the literature accompanied by the drafting of the manuscript. DI and GM provided support in the form of professional appraisal and the provision of supporting literature. LL, FM, MR, CP and EZ critically reviewed and commented on the original draft. MT, GI and GC provided oversight and leadership responsibility for the research activity planning and execution. Critical revisions were performed, and the final version was reviewed and approved by all the authors. Orcid IDs Marika Morabito: 0000-0001-9968-8543 Linda Liepa: 0000-0002-9608-3415 Federica Masci: 0000-0001-6193-9677 Marta Ripamonti: 0000-0001-5143-9767 Elia Zani: 0000-0003-0506-3003 Domenico Iovino: 0000-0002-7911-2026 Cristiano Parise: 0000-0001-8302-1613 Matteo Tozzi: 0000-0002-7300-8260 Giulio Carcano: 0000-0001-5260-615X Giuseppe Ietto: 0000-0001-5029-8173 References Kidney Disease: Improving Global Outcomes (KDIGO) Diabetes Work Group. 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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-6159394","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":441755127,"identity":"a09e9246-87c7-4a9c-86df-087e679125b5","order_by":0,"name":"Marika 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Medicine and Innovation Technology (DiMIT), University of Insubria, Varese","correspondingAuthor":false,"prefix":"","firstName":"Giulio","middleName":"","lastName":"Carcano","suffix":""},{"id":441755138,"identity":"236e96a9-5e6b-434d-b3bd-92c2c672c41d","order_by":11,"name":"Giuseppe Ietto","email":"","orcid":"","institution":"Department of Medicine and Innovation Technology (DiMIT), University of Insubria, Varese","correspondingAuthor":false,"prefix":"","firstName":"Giuseppe","middleName":"","lastName":"Ietto","suffix":""}],"badges":[],"createdAt":"2025-03-05 06:23:19","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6159394/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6159394/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":86909715,"identity":"718051b4-0ac9-4baf-b449-beba597611eb","added_by":"auto","created_at":"2025-07-17 04:53:46","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":525553,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6159394/v1/1a28d6c3-ad48-41bd-9624-00df3d741a69.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003ePatients’ Perspective and Utility of Self-narrative Biographies in the Kidney Transplantation Path: a Pilot Study\u003c/p\u003e","fulltext":[{"header":"INTRODUCTION","content":"\u003cp\u003eChronic kidney disease (CDK) is a progressive condition, defined by a reduced glomerular filtration rate (GFR), divided into five stages, from normal kidney function to evidence of kidney disease.\u003c/p\u003e \u003cp\u003eDue to the rising prevalence of obesity, diabetes and hypertension, in addition to the progressive aging of this population, CKD represents a major public health problem, labeled with increasing morbidity burden, high rates of mortality and severely impaired Quality of Life (QOL). [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eAs patients proceed through the stages of CKD, there is a marked increase in symptoms like anemia and fatigue, and complications like cardiovascular disease, bone and mineral disorders and even mental health conditions (such as depression and anxiety). Therefore, patients\u0026rsquo; exigencies modify along the disease progression through its various stages, forging the CDK\u0026rsquo;s management as a unique challenge [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Kidney transplantation (KT) is nowadays the best establish treatment for end stage renal disease (ESRD) as it is associated with improved QOL, decreased morbidity and mortality, not including the more cost-effectiveness compared to dialysis [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e], but it doesn\u0026rsquo;t come without problems. Either symptom of ESRD, dietary and adjustment of daily habits, and renal replacement therapies (RRT), are highly invasive. Frequently, psychosocial distress is underdiagnosed and undertreated, further increasing morbidity and disease burden for these subjects. [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eNarrative Medicine was developed about 30 years ago with the aim of collecting and interpreting information on the patient's experience of illness as a tool for daily medical practice. The writing process is not interpreted as simply a narrative against forgetting or a solipsistic diary but shifts the treatment into a healing conversation between patient and physician, so that the interpenetration of self and other is seen within the observation site itself. [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eMany authors have suggested that any disease constitutes a perturbation, a non-normative transition of life that requires the individual to work to restore its balance. The presence of a chronic disease triggers the need to reconstruct one's history by linking the past life with the present experience of the disease. In this context, the narrative becomes an opportunity to give voice to the rupture and structure it in a time frame not separated from other life events that are part of the individual's autobiographical story. The application of this tool is recognized in the oncological field, where expressive writing has been shown to have a significant effect on the reduction of negative somatic symptoms. [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eThere is growing recognition that patient-reported outcome measures (PROMs) are important for assessing the effectiveness of health care. [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]\u003c/p\u003e \u003cp\u003ePatient-reported measures can be classified into two different categories depending on whether they relate to perception of health status (PRO), or experience of care received (PRE). The related instruments designed to measure such perceptions are therefore labeled PROMs or PREMs, respectively. [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eA PROM describes information directly perceived and reported by the individual about their health or treatment, without it being reprocessed by anyone else, including physicians and researchers [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Examples of PROs include health-related quality of life (HRQoL), ability to perform daily activities and work, disease-related symptomatology, any side effects of treatment, and adherence to treatment. A PROM is a standardized quantitative assessment that captures the impact of all these aspects as perceived by the patient. Studies involving kidney transplants rarely report PROMs, although regulatory agencies increasingly support their inclusion, as these would help identify outcomes that are important to individuals, beyond the study hypothesis itself. Among the various PROMs, the following have been proposed as possible to be included in the RCTs: participation in life; medication adherence; symptoms and side effects. [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e] Specific examples are the Kidney Disease Quality of Life Instrument (KDQoL) [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] and the Gastrointestinal Symptom Rating Scale (GSRS). [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eThe use of PROMs during clinical encounters provides an opportunity for patients to disclose physical or psychosocial concerns that impact their daily life, aspects not always addressed by the healthcare team. They also enable the team to expertly quantify preponderant components in chronic disease such as symptom burden and HRQOL. The integration of PROMs into medical practice has the potential to improve disease burden assessment and to understand population-level care needs. [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]\u003c/p\u003e \u003cp\u003ePatient perspectives on self-management, which might explain adherence and other Patients' views on self-management, which might explain whether they adhere to therapy, are still the subject of many questions. Qualitative studies can allow a better understanding of the beliefs and knowledge that influence the behaviors and choices in self-management of transplant recipients. [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e] Many studies focus on analyzing a specific task, however, investigating self-management as a multidimensional construct that includes all patient behaviors and thoughts could provide more comprehensive information. Five broad areas were identified that reflect kidney transplant patients' views on self-management: empowerment through autonomy, prevalent fear of consequences, burdensome care and responsibilities, over-medicalization of life, social responsibility, and motivation (including demonstration of gratitude towards the medical team and debt towards the donor). [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eThe main object of this study was to demonstrate how autobiographical narration, as self-expression and recognition of one's own person, among the techniques of Narrative Medicine, can be an element of support for the patient, as the care of the spirit and psychological well-being participate in the overall health of the person, being able to become this activity, moreover, a therapeutic tool useful to the medical and surgical team for taking charge of the patient, improving therapeutic compliance and establishing a closer relationship of trust between doctor and patient.\u003c/p\u003e"},{"header":"PATIENTS AND METHODS","content":"\u003cp\u003e\u003cstrong\u003eStudy design, participants, and procedures\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eVarese\u0026rsquo;s Transplant Surgery Operating Unit has been active since 1996. To date, it has more than 1000 kidney transplants to its credit, making it one of the main national reference points in the field of kidney transplantation in northern Italy.\u003c/p\u003e\n\u003cp\u003eIt has always been essential for us to pay careful attention so that the hope of being able to undergo a kidney transplant is guaranteed, also, to those who must be categorized as a \u0026quot;fragile patient\u0026quot;. From this way of thinking, following the thought expressed in Charon\u0026apos;s Narrative Medicine and in the studies conducted by Pennebaker on the power of writing as a therapeutic tool, this pilot project was born, based on a sample of 18 patients, of different ages and sexes, transplanted in the two-year period 2020-2021, who were administered an indirect questionnaire with semi-structured questions, released following a cognitive meeting with the figure of the Professional Educator (whose task would have been to administer the interviews as external personnel and not already directly involved in the patient\u0026apos;s care process) and part of the surgical team, carried out inside the hospital in the spaces now familiar to the patients, with the idea that this could put them at ease. The purpose of the questionnaire was to investigate, briefly, the experiences related to the pre-and post-transplant period, through open and simple questions that leave everyone the freedom to be able to express themselves according to their own desire and therefore not having to select from a series of possibilities pre-established by the figure of the clinician (as envisaged in many PROMs), and furthermore, the possible adherence to future meetings of autobiographical narration by patients.\u003c/p\u003e\n\u003cp\u003eInclusion criteria were therefore: patients of both sexes, adults (\u0026gt;18 years), who underwent kidney transplant in the two-year period 2020-2021 from DBD/DCD, who had not developed rejection.\u003c/p\u003e\n\u003cp\u003eConversely, exclusion criteria were transplant received in previous years or too close to the interview, LDKT, rejection episode, and non-native-Italian speakers.\u003c/p\u003e\n\u003cp\u003eSince this is a pilot project, we decided to standardize the sample as much as possible, momentarily excluding patients with living donors, in the idea that the emotional experience is very different in the two situations, with the intention of being able to expand the proposal if the results obtained would be promising and after gaining adequate experience in the matter.\u003c/p\u003e\n\u003cp\u003eFor a similar reason, only Italian mother-tongue patients were included as the project would have been based on the narration and expression of their own experiences, consequently, even a minimal language barrier could have represented an obstacle or even an evaluation bias in this preliminary phase.\u003c/p\u003e\n\u003cp\u003eFinally, the selected time frame would have allowed us to evaluate the patients during the first year from the moment of surgery, i.e. the period of time in which outpatient monitoring visits are most frequent, under the assumption that these could represent the moment of greatest emotional load.\u003c/p\u003e\n\u003cp\u003eThe setting of the interview saw the subdivision into three large macro-areas (pre-transplant period, intervention and post-transplant, evaluation of the treatment proposal), with further articulation of the analysis of the moment relating to the peri-intervention:\u003c/p\u003e\n\u003cp\u003e\u0026bull; Experience related to the period prior to the organ transplant\u003c/p\u003e\n\u003cp\u003e1. When you were on the kidney transplant waiting list, what were your predominant emotions and feelings?\u003c/p\u003e\n\u003cp\u003e\u0026bull; Experience related to the post-organ transplant period\u003c/p\u003e\n\u003cp\u003e2. In the period following the organ transplant, how have your life and routine changed?\u003c/p\u003e\n\u003cp\u003e3. How did you feel / do you feel about the periodic admission to the hospital and the frequent post-transplant visits?\u003c/p\u003e\n\u003cp\u003e4. How would you currently describe your life following the surgery?\u003c/p\u003e\n\u003cp\u003e\u0026bull; The intervention proposal\u003c/p\u003e\n\u003cp\u003e5. If within the hospital there was the possibility of carrying out (periodically) individual/group autobiography meetings (with other renal transplant patients), as a support and treatment tool to complement the checks already foreseen, would you use it?\u003c/p\u003e"},{"header":"RESULTS","content":"\u003cp\u003e\u003cstrong\u003eDescriptive Findings\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFrom the answers to the questionnaire proposed to the patients it emerged (Table 1):\u003c/p\u003e\n\u003cp\u003eTable 1. Descriptive findings: selected quotes\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"600\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 118px;\"\u003e\n \u003cp\u003eTheme\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 482px;\"\u003e\n \u003cp\u003eIllustrative selected quotes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 118px;\"\u003e\n \u003cp\u003eWaiting list\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 482px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I cried with joy when I got the call to show up at the hospital for the transplant.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;After all the exams and ranking I was over the moon, I saw the light at the end of the tunnel. Then the months start to pass and then a year the joy starts to turn into a nerve-wracking anticipation. Soon after the panic attacks begin... what if they never call me?\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;My emotions after being listed were a mix of fear, anxiety and not feeling ready.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 118px;\"\u003e\n \u003cp\u003eAfter transplant\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 482px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;After the transplant I came back to life and felt like a normal person again.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;Slowly I felt better and better, full of strength. My body began to give the right answers to my desire to do\u0026quot;.\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;In the early days I lived with the fear of rejection and I was careful of everything, I didn\u0026apos;t exaggerate in my daily routine and I promised myself to live my life much more peacefully, having received a gift\u0026quot;.\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;The change was immediately evident given that I no longer did dialysis, being busy three days a week in the hospital away from my family for almost 5 years had a huge impact on my life and not having to do it anymore gave me back a presence in the family that has been missing for too long.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 118px;\"\u003e\n \u003cp\u003eOutpatient checkups\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 482px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;I knew they were necessary for my health even though I have to say I often came home tired.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;The first few months didn\u0026apos;t go well and I was looking forward to visits to see if there was anything new either way.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;I have always felt serene and confident also because I was aware of the preparation and competence of the medical staff who have been following me for years and who had already saved my life in the past\u0026quot;.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 118px;\"\u003e\n \u003cp\u003eCurrent life description\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 482px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;Now my life is mine. I\u0026apos;m in control of my time again and this gives me an enormous emotional boost.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;I see everything around me from another perspective, without pessimism.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 118px;\"\u003e\n \u003cp\u003eConsiderations about self-narratives and creative activities as a therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 482px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;I think everyone needs a word of support, a voice out of the chorus, which gives meaning to so many things that, seen from our point of view, cannot be explained\u0026quot;.\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;We need to share our own story with others who are in the same condition to help those who are less strong to say: you\u0026apos;re not alone.\u0026quot;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cul\u003e\n \u003cli\u003eduring the \u003cstrong\u003ewaiting list\u003c/strong\u003e period preceding the transplant, the predominant emotions were found to be anxiety, fear, uncertainty, but also hope, joy and desire\u003c/li\u003e\n \u003cli\u003eregarding the experience relating to the \u003cstrong\u003eperi-surgery\u003c/strong\u003e period:\u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003e- from the question relating to the \u003cstrong\u003epost-surgery phase\u003c/strong\u003e, predominant was the sensation of having regained possession of one\u0026apos;s life and having returned to life without the constraints of dialysis, despite the attention paid to interpreting the signals given by one\u0026apos;s body and the daily actions that can be \u0026quot;afforded\u0026quot; remained high\u003c/p\u003e\n\u003cp\u003e- regarding \u003cstrong\u003eoutpatient check-ups\u003c/strong\u003e, the dominant emotions seemed to be anxiety and fear for the possibility of negative news, a sense of expectation and the persistence of an inseparable bond with the disease\u003c/p\u003e\n\u003cp\u003e- in relation to the \u003cstrong\u003ecurrent sensations regarding life after the transplant\u003c/strong\u003e, the importance and beauty of the acquired normality and serenity stood out, together with the sense of re-appropriation of one\u0026apos;s life. However, a minority has contextually highlighted the persistence of concern and uncertainty due to the ever-present possibility of adverse events\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003elastly, the opinion regarding the \u003cstrong\u003eproposal to include the narration within the treatment\u003c/strong\u003e path and the perceived effectiveness of this treatment was investigated: many expressed themselves positively, considering it a useful tool above all to accompany the recipients in the immediate period after the transplant, also from the patient\u0026apos;s entry on the waiting list, given the emotional load full of anxiety and fear of the same, recognizing the merits of the support function precisely in the act of sharing with peers who have faced a similar path, both in listening and storytelling mode.\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eScientific evidence demonstrates that Narrative Medicine is a useful tool for evaluating patients\u0026apos; experience of illness. Recognition of its role in daily medical practice could enrich clinical information by focusing on the needs and critical aspects of patients\u0026apos; lives, influencing their normal therapeutic pathway. It is essential to understand that each disease and each patient is associated with different physical and psychological experiences, presenting a distinct individual treatment pathway. Narrative Medicine participates in a wider cultural change, emphasizing the importance of the humanization of treatments and the personalization of medicine, built on the individual experience, history and needs of each patient. [6]\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCentering care on patients\u0026apos; experience could also provide them with accountability by enabling them to play a key role in the design and management of their care, while also playing a considerable role in prognosis [14, 16, 17]. Taking a more holistic approach than traditional models of care promise the patient a better experience of their disease [2, 9].\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThere is limited information on the economic implications such as health care costs and possible loss of wages. Further research should ideally aim at developing multidisciplinary management strategies that draw on patient experiences, with the overall goal of improving individuals\u0026apos; lives after transplantation.\u003c/p\u003e\n\u003cp\u003eSince each disease has its own characteristics, a proven tool for one type of organ transplant may not necessarily be valid for another.\u003c/p\u003e\n\u003cp\u003eIn order to improve clinical practice, enhance patients\u0026apos; autonomy and ability to cope with possible complications, minimize therapeutic fatigue, and support patient decision-making, more research is needed to validate the efficacy of narrative medicine\u0026apos;s narrative in the context of kidney transplantation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThere are some potential limitations to this study: selection bias may have occurred given the qualitative study design.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments:\u0026nbsp;\u003c/strong\u003eThe authors are also grateful to the patients who have provided personal communications for inclusion in this article.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e: This research received no external funding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eHuman Ethics Approval Statement\u003c/strong\u003e: The study was conducted per the Declaration of Helsinki. Due to its nature and according to local law, this study was approved by the Ethical Committee of the University of Insubria (protocol no. 0119180, 19 October 2023).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eInformed Consent Participation Statement\u003c/strong\u003e: Informed consent was obtained from all subjects involved in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eInformed Consent Publication Statement\u003c/strong\u003e: Not applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Availability Statement\u003c/strong\u003e: The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflicts of Interest\u003c/strong\u003e: The authors declare no conflicts of interest. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAUTHORS CONTRIBUTION\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMM and MP were independently involved in the conception of the interview. MM performed a critical review of the literature accompanied by the drafting of the manuscript. DI and GM provided support in the form of professional appraisal and the provision of supporting literature. LL, FM, MR, CP and EZ critically reviewed and commented on the original draft. MT, GI and GC provided oversight and leadership responsibility for the research activity planning and execution. Critical revisions were performed, and the final version was reviewed and approved by all the authors.\u003cstrong\u003e\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eOrcid IDs\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMarika Morabito: 0000-0001-9968-8543\u003c/p\u003e\n\u003cp\u003eLinda Liepa: 0000-0002-9608-3415\u003c/p\u003e\n\u003cp\u003eFederica Masci: 0000-0001-6193-9677\u003c/p\u003e\n\u003cp\u003eMarta Ripamonti: 0000-0001-5143-9767\u003c/p\u003e\n\u003cp\u003eElia Zani: 0000-0003-0506-3003\u003c/p\u003e\n\u003cp\u003eDomenico Iovino: 0000-0002-7911-2026\u003c/p\u003e\n\u003cp\u003eCristiano Parise:\u0026nbsp;0000-0001-8302-1613\u003c/p\u003e\n\u003cp\u003eMatteo Tozzi: 0000-0002-7300-8260\u003c/p\u003e\n\u003cp\u003eGiulio Carcano: 0000-0001-5260-615X\u003c/p\u003e\n\u003cp\u003eGiuseppe Ietto: 0000-0001-5029-8173\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eKidney Disease: Improving Global Outcomes (KDIGO) Diabetes Work Group. KDIGO 2022 Clinical Practice Guideline for Diabetes Management in Chronic Kidney Disease. Kidney Int. 2022 Nov;102(5S):S1-S127. doi: 10.1016/j.kint.2022.06.008. PMID: 36272764.\u003c/li\u003e\n \u003cli\u003eTang E, Bansal A, Novak M, Mucsi I. Patient-Reported Outcomes in Patients with Chronic Kidney Disease and Kidney Transplant-Part 1. Front Med (Lausanne). 2018 Jan 15;4:254. doi: 10.3389/fmed.2017.00254. PMID: 29379784; PMCID: PMC5775264\u003c/li\u003e\n \u003cli\u003eBrand S, Pollock K. How is continuity of care experienced by people living with chronic kidney disease? J Clin Nurs. 2018 Jan;27(1-2):153-161. doi: 10.1111/jocn.13860. Epub 2017 Jun 29. PMID: 28425171.\u003c/li\u003e\n \u003cli\u003eWang V, Vilme H, Maciejewski ML, Boulware LE. The economic burden of chronic kidney disease and end-stage renal disease. Semin Nephrol (2016) 36(4):319\u0026ndash;30. doi:10.1016/j.semnephrol.2016.05.008\u003c/li\u003e\n \u003cli\u003eMilota MM, van Thiel GJMW, van Delden JJM. Narrative medicine as a medical education tool: A systematic review. Med Teach. 2019 Jul;41(7):802-810. doi: 10.1080/0142159X.2019.1584274. Epub 2019 Apr 14. PMID: 30983460.\u003c/li\u003e\n \u003cli\u003eFioretti C, Mazzocco K, Riva S, et al. Research studies on patients\u0026rsquo; illness experience using the Narrative Medicine approach: a systematic review. BMJ Open 2016;6:e011220. doi:10.1136/bmjopen-2016- 01122\u003c/li\u003e\n \u003cli\u003eZhou C, Wu Y, An S, Li X. Effect of Expressive Writing Intervention on Health Outcomes in Breast Cancer Patients: A Systematic Review and Meta-Analysis of Randomized Controlled Trials. PLoS One. 2015 Jul 7;10(7):e0131802. doi: 10.1371/journal.pone.0131802. PMID: 26151818; PMCID: PMC4494859.\u003c/li\u003e\n \u003cli\u003eGibbons A, Bayfield J, Cinnirella M, Draper H, Johnson RJ, Oniscu GC, Ravanan R, Tomson C, Roderick P, Metcalfe W, Forsythe JLR, Dudley C, Watson CJE, Bradley JA, Bradley C. Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews. BMJ Open. 2021 Apr 14;11(4):e047263. doi: 10.1136/bmjopen-2020-047263. PMID: 33853805; PMCID: PMC8098938\u003c/li\u003e\n \u003cli\u003eWeldring T, Smith SM. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs). Health Serv Insights. 2013 Aug 4;6:61-8. doi: 10.4137/HSI.S11093. PMID: 25114561; PMCID: PMC4089835.\u003c/li\u003e\n \u003cli\u003eBansal D, Bhagat A, Schifano F, Gudala K. Role of patient-reported outcomes and other efficacy endpoints in the drug approval process in Europe (2008-2012). J Epidemiol Glob Health. 2015 Dec;5(4):385-95. doi: 10.1016/j.jegh.2015.04.006. Epub 2015 May 29. 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Do patient-reported measures of symptoms and health status predict mortality in hemodialysis? An assessment of POS-S Renal and EQ-5D. Hemodial Int. 2016 Oct;20(4):618-630. doi: 10.1111/hdi.12415. Epub 2016 May 15. PMID: 27198825.\u003c/li\u003e\n\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":"kidney transplant, patients’ perspective, self-narrative interview, sharing experience, lifestyle changes","lastPublishedDoi":"10.21203/rs.3.rs-6159394/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6159394/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eWaiting for a transplant correlates with trepidation, emotional distress, a sense of guilt and grief toward the deceased donor, anxiety, and even depression. Then, patients must cope with uncertainty and fear about outcomes and changes in personal identity. Aim of this study was to gather patients' perspectives on significant moments in their transplant journey. Face-to-face and semi-structured interviews were conducted with KTRs from 2020\u0026ndash;2021 about (1) waiting-list-period; (2) impact of the transplant on their daily activity; (3) out-of-hospital routine; (4) life changes; (5) self-narrative biography utility. Participants mentioned highly emotional moments, a theme of uncertainty about the outcome emerged and most KTRs reported that sharing their own story normalizes, allows comparisons with others, and relieves the feeling of loneliness; hearing others' narratives appears as a way of gaining knowledge different from the medical standpoint. Transplant experience is characterized by a non-linear timeline different from the chronological steps foreseen by the medical procedure, overlooked as a \"healing moment\". Use of creative activities in health care situations can empower people and increase their well-being allowing emotional release. Due to some limitations (hyper-selected patients, monocentric experience), more research is needed to study the impact of forms of storytelling as an intervention.\u003c/p\u003e","manuscriptTitle":"Patients’ Perspective and Utility of Self-narrative Biographies in the Kidney Transplantation Path: a Pilot Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-14 13:18:59","doi":"10.21203/rs.3.rs-6159394/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":"924140fa-fa9f-43bf-8513-2c6e51fdb74a","owner":[],"postedDate":"April 14th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":47132120,"name":"Biological sciences/Psychology"},{"id":47132121,"name":"Health sciences/Health care"},{"id":47132122,"name":"Health sciences/Medical research"},{"id":47132123,"name":"Health sciences/Medical research/Outcomes research"}],"tags":[],"updatedAt":"2025-07-17T04:53:29+00:00","versionOfRecord":[],"versionCreatedAt":"2025-04-14 13:18:59","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6159394","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6159394","identity":"rs-6159394","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}