Lived Experience of Patients during Treatment of Extranodal NK-/T- Cell Lymphoma: A Phenomenological Inquiry

Lived Experience of Patients during Treatment of Extranodal NK-/T- Cell Lymphoma: A Phenomenological Inquiry | 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 Lived Experience of Patients during Treatment of Extranodal NK-/T- Cell Lymphoma: A Phenomenological Inquiry Hai-ping Liu, Shu-mei Gong, Nan-nan Ge, Ping Liu This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4701973/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 3 You are reading this latest preprint version Abstract Purpose To understand in greater depth patients’ experiences of living and coping with extranodal NK-/T- cell lymphoma, and to inform the development of models of care for this population. Methods A qualitative descriptive approach including face to face interviews with semi-structured questions was applied in the study. The interviews were audio-recorded and transcribed verbatim. Results Twenty-one patients were interviewed from December 2019 to May 2023. Four key themes emerged: (1) physical challenges and adaptation (symptom burden, shift in social roles); (2) psychological stress and adjustment (denial and anger, delayed diagnosis, and coping with psychological stress); (3) reorganization and adaptation of daily life (focusing on their illness, focusing on the present, and life reorganization); and (4) seeking and feedback of social support (social support, shame, escape, and grateful feedback). Conclusions The findings gave a broad insight into the profound impact of extranodal NK-/T- cell lymphoma. To support patients, easily accessible services are needed to improve their quality of life. That includes timely diagnosis, providing psychological support and information, understanding the patient adjustment and adaptation process, and management of symptoms. extranodal NK-/T- cell lymphoma quality of life qualitative study experience Introduction Extranodal NK-/T-cell lymphoma (ENKTCL) is a rare and highly aggressive non-Hodgkin’s lymphoma (NHL), with a higher incidence rate in specific regions of Asia and Latin America, where it accounts for 5 to 15% of all NHL cases (Au et al., 2009 ; de Leval et al., 2023 ; Haverkos et al., 2016 ). This malignancy predominantly impacts young and middle-aged males and exhibits a significant correlation with Epstein - Barr virus (EBV) infection (Campo et al., 2022 ). The clinical manifestations of this disease exhibits a spectrum of diversity and complexity(de Leval et al., 2023 ).The most frequently primary sites of origin include areas above the nasal cavity and oropharynx(Costa et al., 2023 ), and it can also involve in sites such as the skin, gastrointestinal tract, and lungs(Wang et al., 2021 ). Patients often exhibit nasal symptoms like nasal congestion, rhinorrhea, and epistaxis, concurrently accompanied by discomfort in the oropharyngeal region, including dysphonia and odynophagia (Costa et al., 2023 ; Haverkos et al., 2016 ). Despite significant advancements in the diagnosis and treatment, the lack of specific clinical presentations in its early stages often resulted in delayed diagnosis and treatment for patients (Qi et al., 2022 ; Wang et al., 2021 ; Yamaguchi et al., 2018 ). A delay in diagnosing early-stage cancer can significantly impact long-term clinical outcomes (Linck et al., 2022 ), and such a delay may prevent effective symptom management leading to profound psychological distress(Ye et al., 2022 ). Combining chemotherapy and radiotherapy became a recommended therapeutic modality for localized ENKTL(Terro et al., 2022 ; Yamaguchi et al., 2018 ).For advanced ENKTL, comprehensive treatment primarily involving chemotherapy is utilized, and while hematopoietic stem cell transplantation may improve prognosis, the long-term survival rate remains a mere 30% with high recurrence rate(Terro et al., 2022 ). Influenced by factors such as the symptoms, the toxic side effects of chemotherapy, patients with rare cancers are often accompanied by negative emotions such as anxiety and depression, resulting in an increase in the degree of psychological pain of patients, which is not conducive to treatment compliance, and even threatens patient`s quality of life (Low et al., 2024 ; Starreveld et al., 2021 ). At present, there are few reports on the experience of ENKTL patients. Therefore, this study aims to comprehensively analyze the experiences and potential demands of patients with ENKTCL, and providing more solid empirical support for clinical medical staff to offer targeted psychological intervention, optimize the treatment strategy, and improve the patients ‘quality of life. We will focus on the patients’ subjective feelings and experiences in the specific research tasks. Through semi-structured interviews, we will systematically collect patients' detailed descriptions of the disease process, including their mental processes in the face of the disease, physiological changes, and how these changes affect their daily lives. We will also examine how social factors, such as family support and social relations, affect the patient’s experience of illness. Patients and Methods Study design This study was designed using a qualitative descriptive approach to clarify the experiences and needs of patients with ENKTL(Miles et al., 2014 ). Since qualitative content analysis preserves the original text form of the accumulated data while generating analysis categories and context interpretations, this study adopts this method framework. The primary objective of this study was to derive descriptive categories directly from participants ' real experiences(Pope et al., 2002 ) . Sampling method A purposive sampling method was employed to select potential participants through the Department of Hematology, which offers care services for patients with hematological malignancies. Potential participants were selected according to the maximum difference method, such as gender, age, and disease stage of the patient. The inclusion criteria specified that patients aged 18 and over, with informed consent. Patients who had received or have been receiving mental health services or psychotherapy, and patients who had been undergoing palliative treatment at the end of the disease were excluded. Respecting the autonomy of potential participants, information regarding the study was disseminated in a variety of ways. This included the use of posters and direct, face-to-face contact between nurses and patients. Interested individuals were encouraged to reach out to the first author for further information and to receive a verbal description of the study, ensuring that they were fully informed and able to make their own decisions. Data collection Data collection was collected through one-on-one, semi-structured interviews conducted by the first author, who is proficiently trained in qualitative research methodology. Respect, privacy, a non-judgmental stance, and genuine interest in the participants' experiences were consistently upheld. Additionally, the first author shared the same language as the participants (Standard Chinese), aiding in smoothly facilitating conversations. The initial interview guideline was constructed by a single researcher following a comprehensive literature review, which was then discussed and developed into a primary question guide by the research team. This outline was reviewed by a psychologist to ensure that the questions posed would not inflict psychological trauma on the patents. The purpose and significance of the study were thoroughly explained to participants prior to the interviews. Upon signing the informed consent form, the interview was audiotaped and supplemented with notes taken contemporaneously. Participants were given the opportunity to pause or discontinue the interview as necessary. Interviews commenced with inquiries concerning general patient information and gradually transitioned to the outlined main questions (Table 1 ). All interviews were conducted in the ward's meeting room, ensuring patient safety under the care of the charge nurse. Table 1 The outline of interviews Outlines Questions Disease detection and diagnosis 1) How did you initially detect problems in the body? Are there any specific symptoms that have caught your attention? 2) How did you seek medical treatment? Have you made multiple medical visits or experienced misdiagnosis? 3) What were your moods and feelings in the process of diagnosis? What was your reaction to the diagnosis? Symptoms and effects 1) Could you please describe the main symptoms of the illness? And what were the impacts of these symptoms on your daily life? 2) Did your physical condition impact your work, study, or social activities? In what ways? Treatment process and experience 1) What kind of treatment methods have you received? And what unforgettable experiences or feelings did you have during the treatment? 2) Did you encounter any difficulties or challenges during the treatment? How did you deal with them? Psychological changes and coping 1) In what ways has your mindset evolved in the face of your condition? Could you elaborate on the significant shifts you've experienced? 2) How do you adjust your mindset and actively respond to the disease? What are the methods or strategies? Family and social support 1) What support did family and friends give you during your illness? How did such support help you? 2) What role did you think family and social support play in fighting against diseases? Changes in quality of life 1) Does your quality of life change after illness? What are the specific manifestations? 2) How do you adjust your lifestyle and improve your quality of life? What are some good suggestions or experiences? What are your expectations and plans for the future life? Ethical considerations The research protocol received ethical approval from the Ethical Review Board of Xinhua Hospital, Shanghai Jiao Tong University, Shanghai City, China (XHEC-D-2024-107). Written informed consent was secured from all participants by the first author prior to each interview. Each interview was recorded with the participant‘s consent, and the data was coded to ensure the anonymity of the participants. The data were securely stored in a locked cabinet, and all electronic copies were password-protected, with access granted solely to the research team. Data analysis All audiotape-recorded interviews were transcribed verbatim. Data analysis began by reading each transcript from beginning to end, as one would read a novel. Then, each transcript was read word by word to derive codes by highlighting key words or phrases from the text that captured key ideas or concepts(Callans et al., 2016 ; Pope et al., 2002 ). Content analysis followed three major steps(Elo & Kyngäs, 2008 ): (a) Open coding: the initial stage of data analysis, known as open coding, was conducted by the researcher. She made notes of her first impressions and conducted an initial analysis while reading each transcript. The material was then re-read, and any necessary headings were written in the margins to describe key concepts. These headings were then collected onto coding sheets, and categories were freely generated at this stage. b) Creating categories: after open coding, the lists of categories were grouped under higher order headings. These data and other observations that did not belong to the same category should be compared. (c) Abstraction: formulating a general description of the research topic through generating categories. Each category was named using content-characteristic words. Subcategories with similar events and incidents were grouped as categories and categories were grouped as main categories. Quality control This study adhered to the quality guidelines for qualitative research as stipulated by Beck (Beck, 1993 ) and Graneheim and Lundman(Graneheim & Lundman, 2004 ). To showcase sensitivity towards the contextual aspects, the first author exhibited particular diligence during the interview process, invested time in helping participants relax, employed informal language, and acknowledged the participants' sensitivities as well as the potential power imbalance inherent in the interviewer-interviewee relationship. This conscientious sensitivity was sustained throughout the analytical process. To enhance the rigor and transparency of the study, the first author maintained an audit trail throughout the study and documented the evolution of themes during the analytical process. To further enhance the trustworthiness of the analysis, the study adhered to the guidance for quality and validity, especially in content analysis, as Elo and Kyngäs suggested (Elo & Kyngäs, 2008 ). Lastly, in a sincere effort to ensure the accurate representation of their experiences, a comprehensive summary of the principal findings from all the interviews was shared with the participants for their review and feedback. Researcher characteristics and reflexivity The authors of this paper have various perspectives on the issues that this paper highlights: two nurses involved in research and clinical work with these patents; and a qualitative researcher and psychologist who has conducted substantial research with various stakeholders involved in providing support to this group. These multiple perspectives are viewed by the authors as an analytical strength in reflexive thematic analysis where subjectivity is viewed as a key feature. That said, we do recognize that our roles and experiences are likely to make us more inclined to support participation of ‘doubly vulnerable’ participant groups in research. Results The sample size was determined by the principle of data saturation, that is, when the respondents’ data appeared repeatedly and there was no new theme after data analysis. 21 participants were finally determined, including 12 males and 9 females, aged 24–76, with an average age of 44. The general characteristics of the interviewees are displayed in Table 2 . Each participant was interviewed only once, lasting from 43 to 85 minutes (with an average duration of 56.75 minutes). Through the analysis, comparison, and induction of the interview data of 21 ENKTL patients, it is concluded that the disease experience described by this group of patients is a complex and multi-dimensional process, involving multiple themes such as physical, psychological, daily life, and social support. These intertwined themes exhibits a vivid picture of the struggle between patients and diseases. Understanding these topics can help medical teams and society better understand and support patients, providing them with more comprehensive and humanized care and treatment. Physical Challenges and Adaptation This category represented that participants described the physical fatigue, pain, and symptoms related to disease patients suffered from the long journey. Symptom Burden Extranodal NKT cell lymphoma mainly affects the nose, skin, digestive tract, and other parts, and the accompanying symptoms, such as pain, fatigue, and insomnia bring great pain to the patients: 'It smells terrible on the body' (C3), 'I have always had sensitive skin, and now it's like snow on my body every day. There is dander everywhere on the bed sheet after getting up' (C13), or 'I feel pain when inhaling' (C2). These symptoms cause patients to experience pain, discomfort, and a low quality of life every day, seriously affecting their daily life activities as patients describe they, 'Only stay at home every day' (C3) and demonstrate, ‘'Fear of going out, too ugly' (C15). Shift in Social Roles The disease not only brings physical pain to patients but also changes their social roles and identities due to changes in appearance and the consultation process. 'Originally, they had a good career, but now they have to resign to treat the disease' (C4), 'originally planned to get married this year, but now they have broken up' (C5). Psychological Stress and Adjustment This category encompassed the denial of dissatisfaction resulting from delayed diagnosis and the fear induced by the uncertainty of treatment. Denial and Anger The lesions of 16 patients (80%) with denial and anger occurred in the extranodal natural killer/T-cell lymphoma, nasal type. The early symptoms were mainly nasal congestion, runny nose, and nasal bleeding. Among them, 7 patients (nearly half) had experienced repeated misdiagnosis as sinusitis and chronic rhinitis. Delayed diagnosis or untimely referral often led to the dissatisfaction of this group of patients. They all expressed shock and denial, such as: 'Unbelievable', 'Impossible', or 'How can I get cancer?’ 'I was diagnosed with this disease at the beginning of last year. It feels like people have no energy at once. I didn't think it was still a bad disease...' (C2). Delayed Diagnosis Due to its rarity, the public's, the patient themselves, and even some medical professionals, have limited awareness on the disease. Furthermore, the limitations of medical diagnosis and treatment aggravates the psychological burden of the patients. This uncertainty will increase the patient's fear, anxiety, and fear of death as patients recollected that they have, 'Never heard of this disease' (C1), 'Can it be treated? I relayed between many hospitals, and initially, it was treated as rhinitis' (C2). Patients may also be worried about the disease’s progress, treatment’s effect, and its impact on their future lives: 'I still doubt it' (C1); 'I relapsed for the third time this time, I don't know if it can be relieved after chemotherapy, and I don't dare to think about it now. I don't know which day I will leave.' (C16). The above psychological burden may lead to depression, insomnia, and other psychological problems, such as C5: 'I can't sleep every night, and my mind has been wandering (worrying about a lot of things).' Coping with Psychological Stress This group of patients described various psychological coping mechanisms during the diagnosis and treatment of the disease. Most patients (15) will try to adjust their mentality, actively face the disease, and find inner strength and support. "I want to maintain a peaceful mind, and constantly give myself strength in my heart, which may improve the therapeutic effect?" (C2), actively cooperate with the treatment, looking for hope, "I strictly follow the doctor's requirements for treatment, the doctor is the expert in this area, only by actively cooperating with him, there may be a glimmer of hope. (C19)" However, for some patients, ignoring the diagnosis and its consequences is another coping strategy (C9, C17); a patient (C6) avoided telling a friend about the diagnosis to avoid discussion on the matter. Another patient (C18) refused to search for disease-related information on the internet; the fear and rejection of the above patients are mainly caused by the uncertainty of the future and the course of the disease. Reorganization and Adaptation of Daily Life This category referred to the disruption and reorganization of the patient's original life trajectory due to symptoms, disease diagnosis, and treatment needs. Focusing on their Illness The patients' experiences led to a significant shift in priorities, moving from family, work, and other responsibilities to their health status. For instance, C10: “My child is preparing for the middle school entrance examination, a task I used to handle, but now, I've had to set it aside, focus on my health, and recover to see his future. ” “My work is quite demanding, and I was pursuing an undergraduate degree through self-study. But I had to give it up. I've been ill for 3 years, and my only concern is whether I'll survive. ” (C5). Focusing on the Present The patients in this group all stated that the current important task was to cooperate with the medical team, and they had no energy or willingness to ruminate about the past or think about the future. "I don't dare to think about the future. Just like fighting monsters, I don't know if I will be eaten by the monster (disease) tomorrow." (C15). "Occasionally, I recalled the past life, but it would make me feel very down, so I forced myself not to think about it." (C12) .Eager to solve the current symptoms, the patients hoped to improve the current quality of life, "It hurts too much, and it's very uncomfortable every day. Is there any way to relieve it?" (C17) "I'm very weak and have no strength. I don't eat well. What should I do?" (C7). Life Reorganization Since patients were affected by treatment and symptom distress, their daily lives needed to be reorganized. Many adjusted their work and study plans, changed their eating habits, and increased their rest time. For example, C3: "I used to love eating spicy things, but now, on the one hand, I can't eat well, and on the other hand, the doctor doesn't allow it." "I don't think about career planning anymore. I just want to rest well and treat well now." (C15). At the same time, they also needed to adapt to the life rhythm of frequently going to the hospital for treatment. All 18 patients were from outside of Shanghai. Seeking medical treatment from other places and frequently traveling to and from the hospital has become an essential part of their daily lives. This adaptation process was not only a test of the patient’s physical and psychological conditions, but also a trial for coping ability. Seeking and Grateful Feedback This meant that during the course of the illness, patients would actively seek supports from family, friends, medical teams and fellow patients, and were also willing to share the experiences with other patients. Social Supports The support sought by the patients in this group came from close family members, close friends, and the main medical team. This kind of support could not only help them cope with physical challenges but also relieve their psychological stress. For example, C11 revealed: "My wife has been with me and encouraged me…My daughter has been asking for leave to accompany me to see a doctor" (C13). All the patients in this group stated that because extranodal NKT cell lymphoma is very rare, they learned through multiple channels that Dr. Tao (the attending doctor) and his team have rich treatment experiences, which gave them greater confidence and hope. Shame and Escape The nasal type and skin type accounted for the vast majority of the patients in this group. Appearance damage, bad smell, were important reasons that caused patients to feel ashamed or embarrassed. One of the patients mentioned that her appearance was very important to her, and obvious symptoms would cause insecurity (C5). Two patients reported that due to these insecurities, they avoided social activities (C5, C6). There were also two patients with cutaneous lymphoma (C10, C21) who were often told to pay attention to sun protection and not to expose their skin to the sun for too long, so they preferred to stay at home alone and avoided going out. At the same time, some patients (C10, C18) noticed that people kept them away from patients, thinking that they had contracted a certain infectious disease, and people were afraid of being infected. Patients would also worry about discrimination from the outside world and demonstrate increased social withdrawal behavior. Grateful Feedback All the patients in this group expressed their willingness to share their disease-fighting experiences and mental journey to provide support and encouragement for other patients. For example, C20: "This disease is too rare. I hope that through my description, I can help others", "I have taken a long and wrong way. I hope that through my experience, others can take fewer detours" (C14). Most, especially younger patients, proposed that if a patient group or a public welfare organization for extranodal NKT cell lymphoma could be established, it would be able to popularize the prevention and rehabilitation of this disease. Discussion This study explored the illness experience and quality of life of patients with extranodal NKT cell lymphoma through semi-structured interviews which is consistent with previous research conclusions. Some studies have confirmed that cutaneous lymphoma has a significant impact on the physiological, psychological and social fields of patients, and greatly affects their quality of life (Beynon et al., 2015 ; Ottevanger et al., 2023 ). Pain, fatigue, pruritus, and eating difficulties are the most reported physical symptoms in this study, which have a negative effect on the quality of life, such as insomnia and poor nutritional status. Earlier studies have also described the direct correlation between symptoms burden and quality of life in patients with malignant tumors (Ottevanger et al., 2022 ; Serrano et al., 2018 ).Therefore, personalized symptom management strategies are urgently needed to manage various somatic symptoms in patients with extranodal NKT cell lymphoma. Diagnostic delay is a common problem encountered by patients with extranodal NKT, which is consistent with previous research results. This disease is characterized by rarity and the lack of an effective treatment plan. Therefore, patients themselves, including medical workers in remote areas, have a relatively low level of awareness about it, which leads to misdiagnosis. However, misdiagnosis is more likely to cause psychological pressure on patients and affect the timely treatment of symptoms, and the prognosis of the disease(Barke, 2015 ). This indicates that in the case of an uncertain diagnosis, a timely referral is necessary. Although it takes some time for patients and their caregivers to accept the reality of a diagnosis, and there is a large psychological gap, previous studies have reported that timely diagnosis of patients with cutaneous lymphoma can effectively alleviate the negative emotions caused by the uncertainty experienced before diagnosis and produce a calm psychological feeling of "finally settling down"(Beynon et al., 2015 ; Ottevanger et al., 2023 ). This study showed that patients with extranodal NKT cell lymphoma reported similar psychological experiences as those with other malignant tumors(Ottevanger et al., 2023 ; Penberthy et al., 2023 ), and adopted different coping mechanism. Some patients showed avoidance-oriented coping strategies such as avoiding social interactions, refusing to tell others about their diagnosis, and refraining from searching for disease-related information online. While some patients would adopt adaptive strategies, such as accepting the disease in a timely manner and seeking social supports from family and friends. Previous studies have confirmed that patients who adopt avoidance-oriented coping strategies cannot understand the necessity of treatment and care, and have low compliance(Porkert et al., 2018 ; Wahl et al., 2013 ), while patients who adopt adaptive strategies report more compliance behaviors, which is conducive to the implementation of disease treatment plans(Garchinski et al., 2014 ) . This study demonstrated that the high symptom burden of extranodal NKT cell lymphoma has a significantly negative impact on the daily life of patients, mainly manifested in the form of changes in career planning, abilities, and daily hobbies likely associated with pain, fatigue, image damage, and physical condition decline. In this study, the focus of patients is on themselves and the present, which is consistent with J Kabat-Zinn’s definition of ' mindfulness ' as: a kind of awareness, that is, a kind of awareness that emerges by purposefully focusing on the present and uncritically aware of the experience presented by one moment after another (Kabat-Zinn, 2010 ). A comparative study of mindfulness-based cancer rehabilitation and supportive expressive group therapy found that mindfulness therapy is a long-term effective adjuvant therapy tool for breast cancer patients, which can effectively alleviate the negative emotions of patients(Carlson et al., 2016 ). This study found that some patients had more social withdrawal behaviors due to the obvious sense of shame, which is consistent with the conclusion of previous studies. Stigma is the main influencing factor of the social isolation level in colorectal cancer patients (Lim et al., 2021 ; Wang et al., 2022 ). Colorectal cancer patients are often reluctant to go out, interact with people, prefer to stay away from social groups, and have different degrees of alienation from surrounding people and society because of the stigma brought by the disease itself (Lim et al., 2021 ). It is suggested that patients can pay attention to their own bodies, emotions and feelings by continuously strengthening the training of this awareness, thereby reducing unhelpful, non-judgmental overreactions and incenting self-reflection to alleviate negative emotions. Studies have found that family is the main source of psychological support for patients with malignant tumors during radiotherapy and chemotherapy (Brajković et al., 2023 ; Pape et al., 2021 ). Family members can provide patients with explanations, communication and suggestions. The most important thing is to convey comfort and security, and provide methods for patients to accept themselves correctly(Brajković et al., 2023 ). The support of professional medical staff, especially in the early stage after discharge, can effectively improve the negative emotions of patients(Pape et al., 2021 ). Implications for nursing Our study provides important insight for nurses working with cancer patients, especially rare cancer, in the management of patient care and treatment. It reveals that the psychosocial and physical burden and needs of patients struggling with this life threatening disease are inseparable from each other. Firstly, it is are necessary for nurses to use some assessment tools to firstly identify various symptoms before intervention. For example, based on the patient-reported outcome (PRO), which is now widely used in clinical practice and has reliable reliability and validity. Because based on the patient’s own evaluation of their functional status, it may better reflect their quality of life. Secondly, nurses should pay attention to assessing patients' perceptions of the disease and the coping strategies they prefer to adopt. Sufficient patient education and information support care can effectively improve the self-management of symptoms and the quality of life of patients by promoting the adoption of adaptive coping strategies. Thirdly, it is necessary for medical staff to use teaching resources, interactive dynamics and patient groups to provide educational activities to encourage patients to participate in patient activities, promote experience exchanging, and help patients increasing their sense of belonging and confidence in disease and symptom management. Conclusions Our study revealed extranodal NK-/T- cell lymphoma can have a profound effect on patients. While there are positive aspects to psychological and relational impact is significant. Diagnosis delay, symptom burdens and the experiences of caring trigger physical challenges, the psychological stress and reorganization and adaptation of daily life, which give a broad insight into the profound impact of support patients, easily accessible services are needed to improve their quality of life. That includes timely diagnosis, providing psychological supports and information, understanding the patient adjustment and adaptation process, and management of symptoms. Table 2 Demographic information of the research participants (n = 8). Participant Sex Age Level of Education Marital Status Occupation Medical Payment Lesion Site Time since diagnosis(months) Stage C1 Male 51 Junior high school Married Farmer Remote Medical Insurance Nasal-type 12 Ⅳ C2 Male 53 Primary school Married Farmer Charged Medical Service Oropharynx 24 Ⅱ C3 Male 28 High school Married Driver Remote Medical Insurance Tonsils 10 Ⅳ C4 Male 37 Junior college Single Clerk Remote Medical Insurance Cutaneous 10 Ⅳ C5 Female 33 Junior college Single Clerk Charged Medical Service Oropharynx 36 Ⅳ C6 Male 75 Technical secondary school Married Retired Shanghai Municipal Medical Insurance Nasal-type 12 Ⅱ C7 Male 51 Junior high school Married Unemployed Shanghai Municipal Medical Insurance Nasal-type 84 Ⅳ C8 Male 29 High school Married Unemployed Charged Medical Service Nasal-type 7 Ⅰ C9 Male 47 Junior college Married Sales Charged Medical Service Hypopharynx 7 Ⅱ C10 Female 42 Bachelor's Degree Married Teacher Charged Medical Service Cutaneous 6 Ⅳ C11 Female 76 Junior high school Married Retired Shanghai Municipal Medical Insurance Cutaneous 6 Ⅳ C12 Female 36 High school Married Clerk Charged Medical Service Nasal-type 48 Ⅳ C13 Female 58 Primary school Married Farmer Remote Medical Insurance Cutaneous 48 Ⅳ C14 Male 55 Junior high school Married Retired Remote Medical Insurance Nasal-type、testicles 9 Ⅳ C15 Male 35 Bachelor's Degree Married Unemployed Remote Medical Insurance Nasal-type、eyeball 18 Ⅳ C16 Female 24 Junior college Single Unemployed Charged Medical Service Nasal-type 48 Ⅳ C17 Female 36 Junior college Married Accountant Remote Medical Insurance Nasal-type 32 Ⅳ C18 Male 43 Bachelor's Degree Married Teacher Remote Medical Insurance Nasal-type 12 Ⅱ C19 Male 46 Bachelor's Degree Married Clerk Remote Medical Insurance Face 12 Ⅳ C20 Female 25 Junior college Single Clerk Remote Medical Insurance Oropharynx 36 Ⅳ C21 Female 57 Primary school Married Retired Remote Medical Insurance Cutaneous 30 Ⅳ Declarations Acknowledgements The authors would like to thank all participating extranodal NK-/T- cell lymphoma patients for their valuable contributions to this study. Author contribution P.L. concepted and designed the study. H.P.L. and N.N.G. performed data collection. H.P.L and S.M.G performed data analysis. H.P.L. wrote the first draft of the manuscript. All authors critically reviewed and revised the manuscript. Funding This study was sponsored by the Nursing Talents Project of Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine (xhlgg007). Ethics approval Ethical approval was received from the Ethics Committee of Xinhua Hospital Affiliated to Shanghai Jiaotong University School of Medicine (IRB No. XHEC-D-2024-107 prior to study initiation and the study was conducted in accordance with the Declaration of Helsinki. Consent to participate Written informed consent was obtained from all individual participants included in the study. Competing interests The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. 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Patient-centered care in cancer treatment programs: the future of integrative oncology through psychoeducation. Future Oncol, 10 (16), 2603-2614. https://doi.org/https://doi.org/10.2217/fon.14.186 Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today, 24 (2), 105-112. https://doi.org/https://doi.org/10.1016/j.nedt.2003.10.001 Haverkos, B. M., Pan, Z., Gru, A. A., et al. (2016). Extranodal NK/T Cell Lymphoma, Nasal Type (ENKTL-NT): An Update on Epidemiology, Clinical Presentation, and Natural History in North American and European Cases. Curr Hematol Malig Rep, 11 (6), 514-527. https://doi.org/https://doi.org/10.1111/bjd.13841 Kabat‐Zinn, J. (2010). Mindfulness-Based Interventions in Context: Past, Present, and Future. Clinical Psychology Science & Practice, 10 (2), 144-156. https://doi.org/ https://doi.org/10.1093/clipsy.bpg016 Lim, C. Y. S., Laidsaar-Powell, R. C., Young, J. M., et al. (2021). Colorectal cancer survivorship: A systematic review and thematic synthesis of qualitative research. Eur J Cancer Care, 30 (4), 18. https://doi.org/https://doi.org/10.1111/bjd.13841 Linck, P. A., Garnier, C., Depetiteville, M. P., et al. (2022, Mar). Impact of the COVID-19 lockdown in France on the diagnosis and staging of breast cancers in a tertiary cancer centre. Eur Radiol, 32 (3), 1644-1651. https://doi.org/https://doi: 10.1007/s00330-021-08264-3. Low, C. E., Loke, S., Pang, G. E., et al. (2024). Psychological outcomes in patients with rare cancers: a systematic review and meta-analysis. EClinicalMedicine, 72 (102631). https://doi.org/https://doi.org/10.1016/j.eclinm.2024.102631 Miles, M. B., Huberman, M. A., & Saldana, J. (2014). Qualitative Data Analysis: A Methods Sourcebook. SAGE Publications Ltd (CA) . Ottevanger, R., Feenstra, J. S., van Vliet, L. M., et al. (2023). Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T-cell lymphoma on quality of life. Skin Health Dis, 3 (6). https://doi.org/ https://doi.org/10.1002/ski2.300 Ottevanger, R., van Beugen, S., Evers, A. W. M., et al. (2022). Itch in patients with cutaneous T-cell lymphoma as a quality of life indicator. JAAD Int, 9 , 57-64. Pape, E., Vlerick, I., Van Nieuwenhove, Y., et al. (2021). Experiences and needs of patients with rectal cancer confronted with bowel problems after stoma reversal: A systematic review and thematic-synthesis. Eur J Oncol Nurs, 54 (102018), 20. https://doi.org/https://doi.org/10.1016/j.ejon.2021.102018 Penberthy, J. K., Stewart, A. L., Centeno, C. F., et al. (2023). Psychological Aspects of Breast Cancer. Psychiatr Clin North Am, 46 (3), 551-570. https://doi.org/https://doi.org/10.1016/j.psc.2023.04.010 Pope, C., van Royen, P., & Baker, R. (2002). Qualitative methods in research on healthcare quality. Qual Saf Health Care, 11 (2), 148-152. https://doi.org/https://doi.org/10.1136/qhc.11.2.148 Porkert, S., Lehner-Baumgartner, E., Valencak, J., et al. (2018). Patients' Illness Perception as a Tool to Improve Individual Disease Management in Primary Cutaneous Lymphomas. Acta Derm Venereol, 98 (2), 240-245. https://doi.org/https://doi.org/10.2340/00015555-2819 Qi, F., Xie, Y., Wang, D., et al. (2022). Comparison analysis of first-line asparaginase- versus non-asparaginase-based regimens for early-stage extranodal NK/T-cell lymphoma. Ann Hematol, 101 (9), 2021-2034. https://doi.org/https://doi.org/10.1007/s00277-022-04892-x Serrano, L., Martinez-Escala, M. E., Zhou, X. A., et al. (2018). Pruritus in Cutaneous T-Cell Lymphoma and Its Management. Dermatol Clin, 36 (3), 245-258. https://doi.org/https://doi.org/10.1016/j.det.2018.02.011 Starreveld, D. E. J., Habers, G. E. A., Valdimarsdottir, H. B., et al. (2021). Cancer-related Fatigue in Relation to Chronotype and Sleep Quality in (Non-)Hodgkin Lymphoma Survivors. J Biol Rhythms, 36 (1), 71-83. https://doi.org/https://doi.org/10.1177/0748730420987327 Terro, K., Sharrouf, L., & El Cheikh, J. (2022). Progress of Hematopoietic Stem Cell Transplantation and Radiotherapy in the Treatment of Extranodal NK/T Cell Lymphoma. Front Oncol, 12 (832428). https://doi.org/https://doi.org/10.3389/fonc.2022.832428 Wahl, A., Robinson, H., Langeland, E., et al. (2013). Clinical characteristics associated with illness perception in psoriasis. Acta Dermato-Venereologica, 94 (3), 271-275. https://doi.org/ https://doi.org/10.2340/00015555-1673 Wang, H., Fu, B. B., Gale, R. P., et al. (2021). NK-/T-cell lymphomas. Leukemia, 35 (9), 2460-2468. https://doi.org/https://doi.org/10.1038/s41375-021-01313-2 Wang, Y., Li, S., Gong, J., et al. (2022). Perceived Stigma and Self-Efficacy of Patients With Inflammatory Bowel Disease-Related Stoma in China: A Cross-Sectional Study. Front Med, 9 (813367). https://doi.org/https://doi.org/10.3389/fmed.2022.813367 Yamaguchi, M., Suzuki, R., & Oguchi, M. (2018). Advances in the treatment of extranodal NK/T-cell lymphoma, nasal type. Blood, 131 (23), blood-2017-2012-791418. https://doi.org/https://doi.org/10.1182/blood-2017-12-791418 Ye, Y., Wang, J., Cai, S., et al. (2022, Sep). Psychological distress of cancer patients caused by treatment delay during the COVID-19 pandemic in China: A cross-sectional study. Psychooncology, 31 (9), 1607-1615. https://doi.org/ https://doi: 10.1002/pon.5946. Additional Declarations No competing interests reported. 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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-4701973","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":325634520,"identity":"a00544fa-68a3-4539-9c25-d52d73d5731e","order_by":0,"name":"Hai-ping Liu","email":"","orcid":"","institution":"Xin Hua Hospital Affiliated to Shang Hai Jiao Tong University School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Hai-ping","middleName":"","lastName":"Liu","suffix":""},{"id":325634521,"identity":"26631562-cf4a-4752-a684-aa00e75dd7da","order_by":1,"name":"Shu-mei Gong","email":"","orcid":"","institution":"Xin Hua Hospital Affiliated to Shang Hai Jiao Tong University School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Shu-mei","middleName":"","lastName":"Gong","suffix":""},{"id":325634522,"identity":"37bc0d3a-12af-4fcf-b565-a4b1f2909f51","order_by":2,"name":"Nan-nan Ge","email":"","orcid":"","institution":"Xin Hua Hospital Affiliated to Shang Hai Jiao Tong University School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Nan-nan","middleName":"","lastName":"Ge","suffix":""},{"id":325634523,"identity":"1e46214a-4f18-4dfe-abd2-ca431e016e33","order_by":3,"name":"Ping Liu","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABBUlEQVRIiWNgGAWjYBACPmYgkcDAwMPG3sBwgLEBLGiAVwsbVIscH88BYrVAaWM5CaBG4rSw85g9eLijNrFN8o3h4cIdh+V125s3MPyo2MbAP7sBh8N4zA0SzxxPbJNOSzg888xhw21njhUw9py5zSBx5wAuLWYSiW3HgFqSDxzmbTvMuO1GjgEzY9ttBgOQU/FqkTzYANJiv+3+G6K01BizSTCDbUncdoOHkBa2coPEtgNybDxAv/C2pSdvO5NWcBDoFx6JG9i18PMf3vbwZ1sdj3z7GePPvG3WttuOH9744EfFbTn+Gdi1MECi5jCq0AEg5sGlHqqlDo/8KBgFo2AUjHgAAIUcXtqQkiSiAAAAAElFTkSuQmCC","orcid":"","institution":"Xin Hua Hospital Affiliated to Shang Hai Jiao Tong University School of Medicine","correspondingAuthor":true,"prefix":"","firstName":"Ping","middleName":"","lastName":"Liu","suffix":""}],"badges":[],"createdAt":"2024-07-08 01:36:38","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4701973/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4701973/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":61742201,"identity":"6ce11ab6-894f-4a2c-89bf-082f2cdd056b","added_by":"auto","created_at":"2024-08-05 05:34:38","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":672000,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4701973/v1/8e80da70-f5d7-4996-a989-9ae46988f2ee.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Lived Experience of Patients during Treatment of Extranodal NK-/T- Cell Lymphoma: A Phenomenological Inquiry","fulltext":[{"header":"Introduction","content":"\u003cp\u003eExtranodal NK-/T-cell lymphoma (ENKTCL) is a rare and highly aggressive non-Hodgkin\u0026rsquo;s lymphoma (NHL), with a higher incidence rate in specific regions of Asia and Latin America, where it accounts for 5 to 15% of all NHL cases (Au et al., \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2009\u003c/span\u003e; de Leval et al., \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Haverkos et al., \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2016\u003c/span\u003e). This malignancy predominantly impacts young and middle-aged males and exhibits a significant correlation with Epstein - Barr virus (EBV) infection (Campo et al., \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). The clinical manifestations of this disease exhibits a spectrum of diversity and complexity(de Leval et al., \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2023\u003c/span\u003e).The most frequently primary sites of origin include areas above the nasal cavity and oropharynx(Costa et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2023\u003c/span\u003e), and it can also involve in sites such as the skin, gastrointestinal tract, and lungs(Wang et al., \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Patients often exhibit nasal symptoms like nasal congestion, rhinorrhea, and epistaxis, concurrently accompanied by discomfort in the oropharyngeal region, including dysphonia and odynophagia (Costa et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Haverkos et al., \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2016\u003c/span\u003e). Despite significant advancements in the diagnosis and treatment, the lack of specific clinical presentations in its early stages often resulted in delayed diagnosis and treatment for patients (Qi et al., \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Wang et al., \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Yamaguchi et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). A delay in diagnosing early-stage cancer can significantly impact long-term clinical outcomes (Linck et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2022\u003c/span\u003e), and such a delay may prevent effective symptom management leading to profound psychological distress(Ye et al., \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e2022\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eCombining chemotherapy and radiotherapy became a recommended therapeutic modality for localized ENKTL(Terro et al., \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Yamaguchi et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2018\u003c/span\u003e).For advanced ENKTL, comprehensive treatment primarily involving chemotherapy is utilized, and while hematopoietic stem cell transplantation may improve prognosis, the long-term survival rate remains a mere 30% with high recurrence rate(Terro et al., \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). Influenced by factors such as the symptoms, the toxic side effects of chemotherapy, patients with rare cancers are often accompanied by negative emotions such as anxiety and depression, resulting in an increase in the degree of psychological pain of patients, which is not conducive to treatment compliance, and even threatens patient`s quality of life (Low et al., \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e2024\u003c/span\u003e; Starreveld et al., \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). At present, there are few reports on the experience of ENKTL patients. Therefore, this study aims to comprehensively analyze the experiences and potential demands of patients with ENKTCL, and providing more solid empirical support for clinical medical staff to offer targeted psychological intervention, optimize the treatment strategy, and improve the patients \u0026lsquo;quality of life. We will focus on the patients\u0026rsquo; subjective feelings and experiences in the specific research tasks. Through semi-structured interviews, we will systematically collect patients' detailed descriptions of the disease process, including their mental processes in the face of the disease, physiological changes, and how these changes affect their daily lives. We will also examine how social factors, such as family support and social relations, affect the patient\u0026rsquo;s experience of illness.\u003c/p\u003e"},{"header":"Patients and Methods","content":"\u003cdiv id=\"Sec3\"\u003e\n \u003ch2\u003eStudy design\u003c/h2\u003e\n \u003cp\u003eThis study was designed using a qualitative descriptive approach to clarify the experiences and needs of patients with ENKTL(Miles et al., \u003cspan\u003e2014\u003c/span\u003e). Since qualitative content analysis preserves the original text form of the accumulated data while generating analysis categories and context interpretations, this study adopts this method framework. The primary objective of this study was to derive descriptive categories directly from participants \u0026apos; real experiences(Pope et al., \u003cspan\u003e2002\u003c/span\u003e) .\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec4\"\u003e\n \u003ch2\u003eSampling method\u003c/h2\u003e\n \u003cp\u003eA purposive sampling method was employed to select potential participants through the Department of Hematology, which offers care services for patients with hematological malignancies. Potential participants were selected according to the maximum difference method, such as gender, age, and disease stage of the patient. The inclusion criteria specified that patients aged 18 and over, with informed consent. Patients who had received or have been receiving mental health services or psychotherapy, and patients who had been undergoing palliative treatment at the end of the disease were excluded.\u003c/p\u003e\n \u003cp\u003eRespecting the autonomy of potential participants, information regarding the study was disseminated in a variety of ways. This included the use of posters and direct, face-to-face contact between nurses and patients. Interested individuals were encouraged to reach out to the first author for further information and to receive a verbal description of the study, ensuring that they were fully informed and able to make their own decisions.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec5\"\u003e\n \u003ch2\u003eData collection\u003c/h2\u003e\n \u003cp\u003eData collection was collected through one-on-one, semi-structured interviews conducted by the first author, who is proficiently trained in qualitative research methodology. Respect, privacy, a non-judgmental stance, and genuine interest in the participants\u0026apos; experiences were consistently upheld. Additionally, the first author shared the same language as the participants (Standard Chinese), aiding in smoothly facilitating conversations. The initial interview guideline was constructed by a single researcher following a comprehensive literature review, which was then discussed and developed into a primary question guide by the research team. This outline was reviewed by a psychologist to ensure that the questions posed would not inflict psychological trauma on the patents. The purpose and significance of the study were thoroughly explained to participants prior to the interviews. Upon signing the informed consent form, the interview was audiotaped and supplemented with notes taken contemporaneously. Participants were given the opportunity to pause or discontinue the interview as necessary. Interviews commenced with inquiries concerning general patient information and gradually transitioned to the outlined main questions (Table\u003cspan\u003e1\u003c/span\u003e). All interviews were conducted in the ward\u0026apos;s meeting room, ensuring patient safety under the care of the charge nurse.\u003c/p\u003e\n \u003cdiv\u003e\n \u003ctable id=\"Tab1\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv\u003eTable 1\u003c/div\u003e\n \u003cdiv\u003e\n \u003cp\u003eThe outline of interviews\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eOutlines\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eQuestions\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDisease detection and diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1) How did you initially detect problems in the body? Are there any specific symptoms that have caught your attention? 2) How did you seek medical treatment? Have you made multiple medical visits or experienced misdiagnosis? 3) What were your moods and feelings in the process of diagnosis? What was your reaction to the diagnosis?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSymptoms and effects\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1) Could you please describe the main symptoms of the illness? And what were the impacts of these symptoms on your daily life? 2) Did your physical condition impact your work, study, or social activities? In what ways?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eTreatment process and experience\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1) What kind of treatment methods have you received? And what unforgettable experiences or feelings did you have during the treatment?\u003c/p\u003e\n \u003cp\u003e2) Did you encounter any difficulties or challenges during the treatment? How did you deal with them?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePsychological changes and coping\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1) In what ways has your mindset evolved in the face of your condition? Could you elaborate on the significant shifts you\u0026apos;ve experienced? 2) How do you adjust your mindset and actively respond to the disease? What are the methods or strategies?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFamily and social support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1) What support did family and friends give you during your illness? How did such support help you? 2) What role did you think family and social support play in fighting against diseases?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eChanges in quality of life\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1) Does your quality of life change after illness? What are the specific manifestations? 2) How do you adjust your lifestyle and improve your quality of life? What are some good suggestions or experiences? What are your expectations and plans for the future life?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec6\"\u003e\n \u003ch2\u003eEthical considerations\u003c/h2\u003e\n \u003cp\u003eThe research protocol received ethical approval from the Ethical Review Board of Xinhua Hospital, Shanghai Jiao Tong University, Shanghai City, China (XHEC-D-2024-107). Written informed consent was secured from all participants by the first author prior to each interview. Each interview was recorded with the participant\u0026lsquo;s consent, and the data was coded to ensure the anonymity of the participants. The data were securely stored in a locked cabinet, and all electronic copies were password-protected, with access granted solely to the research team.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec7\"\u003e\n \u003ch2\u003eData analysis\u003c/h2\u003e\n \u003cp\u003eAll audiotape-recorded interviews were transcribed verbatim. Data analysis began by reading each transcript from beginning to end, as one would read a novel. Then, each transcript was read word by word to derive codes by highlighting key words or phrases from the text that captured key ideas or concepts(Callans et al., \u003cspan\u003e2016\u003c/span\u003e; Pope et al., \u003cspan\u003e2002\u003c/span\u003e). Content analysis followed three major steps(Elo \u0026amp; Kyng\u0026auml;s, \u003cspan\u003e2008\u003c/span\u003e):\u003c/p\u003e\n \u003cp\u003e(a) Open coding: the initial stage of data analysis, known as open coding, was conducted by the researcher. She made notes of her first impressions and conducted an initial analysis while reading each transcript. The material was then re-read, and any necessary headings were written in the margins to describe key concepts. These headings were then collected onto coding sheets, and categories were freely generated at this stage. \u003cspan\u003e\u003c/span\u003e\u003c/p\u003e\n \u003cp\u003eb) Creating categories: after open coding, the lists of categories were grouped under higher order headings. These data and other observations that did not belong to the same category should be compared.\u003c/p\u003e \u003cspan\u003e\n \u003cp\u003e(c) Abstraction: formulating a general description of the research topic through generating categories. Each category was named using content-characteristic words. Subcategories with similar events and incidents were grouped as categories and categories were grouped as main categories.\u003c/p\u003e\n \u003c/span\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec8\"\u003e\n \u003ch2\u003eQuality control\u003c/h2\u003e\n \u003cp\u003eThis study adhered to the quality guidelines for qualitative research as stipulated by Beck (Beck, \u003cspan\u003e1993\u003c/span\u003e) and Graneheim and Lundman(Graneheim \u0026amp; Lundman, \u003cspan\u003e2004\u003c/span\u003e). To showcase sensitivity towards the contextual aspects, the first author exhibited particular diligence during the interview process, invested time in helping participants relax, employed informal language, and acknowledged the participants\u0026apos; sensitivities as well as the potential power imbalance inherent in the interviewer-interviewee relationship. This conscientious sensitivity was sustained throughout the analytical process.\u003c/p\u003e\n \u003cp\u003eTo enhance the rigor and transparency of the study, the first author maintained an audit trail throughout the study and documented the evolution of themes during the analytical process. To further enhance the trustworthiness of the analysis, the study adhered to the guidance for quality and validity, especially in content analysis, as Elo and Kyng\u0026auml;s suggested (Elo \u0026amp; Kyng\u0026auml;s, \u003cspan\u003e2008\u003c/span\u003e).\u003c/p\u003e\n \u003cp\u003eLastly, in a sincere effort to ensure the accurate representation of their experiences, a comprehensive summary of the principal findings from all the interviews was shared with the participants for their review and feedback.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec9\"\u003e\n \u003ch2\u003eResearcher characteristics and reflexivity\u003c/h2\u003e\n \u003cp\u003eThe authors of this paper have various perspectives on the issues that this paper highlights: two nurses involved in research and clinical work with these patents; and a qualitative researcher and psychologist who has conducted substantial research with various stakeholders involved in providing support to this group. These multiple perspectives are viewed by the authors as an analytical strength in reflexive thematic analysis where subjectivity is viewed as a key feature. That said, we do recognize that our roles and experiences are likely to make us more inclined to support participation of \u0026lsquo;doubly vulnerable\u0026rsquo; participant groups in research.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThe sample size was determined by the principle of data saturation, that is, when the respondents\u0026rsquo; data appeared repeatedly and there was no new theme after data analysis. 21 participants were finally determined, including 12 males and 9 females, aged 24\u0026ndash;76, with an average age of 44. The general characteristics of the interviewees are displayed in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003eEach participant was interviewed only once, lasting from 43 to 85 minutes (with an average duration of 56.75 minutes). Through the analysis, comparison, and induction of the interview data of 21 ENKTL patients, it is concluded that the disease experience described by this group of patients is a complex and multi-dimensional process, involving multiple themes such as physical, psychological, daily life, and social support. These intertwined themes exhibits a vivid picture of the struggle between patients and diseases. Understanding these topics can help medical teams and society better understand and support patients, providing them with more comprehensive and humanized care and treatment.\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003ePhysical Challenges and Adaptation\u003c/h2\u003e \u003cp\u003eThis category represented that participants described the physical fatigue, pain, and symptoms related to disease patients suffered from the long journey.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eSymptom Burden\u003c/h2\u003e \u003cp\u003eExtranodal NKT cell lymphoma mainly affects the nose, skin, digestive tract, and other parts, and the accompanying symptoms, such as pain, fatigue, and insomnia bring great pain to the patients: 'It smells terrible on the body' (C3), 'I have always had sensitive skin, and now it's like snow on my body every day. There is dander everywhere on the bed sheet after getting up' (C13), or 'I feel pain when inhaling' (C2). These symptoms cause patients to experience pain, discomfort, and a low quality of life every day, seriously affecting their daily life activities as patients describe they, 'Only stay at home every day' (C3) and demonstrate, \u0026lsquo;'Fear of going out, too ugly' (C15).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eShift in Social Roles\u003c/h2\u003e \u003cp\u003eThe disease not only brings physical pain to patients but also changes their social roles and identities due to changes in appearance and the consultation process. 'Originally, they had a good career, but now they have to resign to treat the disease' (C4), 'originally planned to get married this year, but now they have broken up' (C5).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003ePsychological Stress and Adjustment\u003c/h2\u003e \u003cp\u003eThis category encompassed the denial of dissatisfaction resulting from delayed diagnosis and the fear induced by the uncertainty of treatment.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eDenial and Anger\u003c/h2\u003e \u003cp\u003eThe lesions of 16 patients (80%) with denial and anger occurred in the extranodal natural killer/T-cell lymphoma, nasal type. The early symptoms were mainly nasal congestion, runny nose, and nasal bleeding. Among them, 7 patients (nearly half) had experienced repeated misdiagnosis as sinusitis and chronic rhinitis. Delayed diagnosis or untimely referral often led to the dissatisfaction of this group of patients. They all expressed shock and denial, such as: 'Unbelievable', 'Impossible', or 'How can I get cancer?\u0026rsquo; 'I was diagnosed with this disease at the beginning of last year. It feels like people have no energy at once. I didn't think it was still a bad disease...' (C2).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eDelayed Diagnosis\u003c/h2\u003e \u003cp\u003eDue to its rarity, the public's, the patient themselves, and even some medical professionals, have limited awareness on the disease. Furthermore, the limitations of medical diagnosis and treatment aggravates the psychological burden of the patients. This uncertainty will increase the patient's fear, anxiety, and fear of death as patients recollected that they have, 'Never heard of this disease' (C1), 'Can it be treated? I relayed between many hospitals, and initially, it was treated as rhinitis' (C2). Patients may also be worried about the disease\u0026rsquo;s progress, treatment\u0026rsquo;s effect, and its impact on their future lives: 'I still doubt it' (C1); 'I relapsed for the third time this time, I don't know if it can be relieved after chemotherapy, and I don't dare to think about it now. I don't know which day I will leave.' (C16). The above psychological burden may lead to depression, insomnia, and other psychological problems, such as C5: 'I can't sleep every night, and my mind has been wandering (worrying about a lot of things).'\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eCoping with Psychological Stress\u003c/h2\u003e \u003cp\u003eThis group of patients described various psychological coping mechanisms during the diagnosis and treatment of the disease. Most patients (15) will try to adjust their mentality, actively face the disease, and find inner strength and support. \"I want to maintain a peaceful mind, and constantly give myself strength in my heart, which may improve the therapeutic effect?\" (C2), actively cooperate with the treatment, looking for hope, \"I strictly follow the doctor's requirements for treatment, the doctor is the expert in this area, only by actively cooperating with him, there may be a glimmer of hope. (C19)\" However, for some patients, ignoring the diagnosis and its consequences is another coping strategy (C9, C17); a patient (C6) avoided telling a friend about the diagnosis to avoid discussion on the matter. Another patient (C18) refused to search for disease-related information on the internet; the fear and rejection of the above patients are mainly caused by the uncertainty of the future and the course of the disease.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eReorganization and Adaptation of Daily Life\u003c/h2\u003e \u003cp\u003eThis category referred to the disruption and reorganization of the patient's original life trajectory due to symptoms, disease diagnosis, and treatment needs.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eFocusing on their Illness\u003c/h2\u003e \u003cp\u003eThe patients' experiences led to a significant shift in priorities, moving from family, work, and other responsibilities to their health status. For instance, C10: \u0026ldquo;My child is preparing for the middle school entrance examination, a task I used to handle, but now, I've had to set it aside, focus on my health, and recover to see his future. \u0026rdquo; \u0026ldquo;My work is quite demanding, and I was pursuing an undergraduate degree through self-study. But I had to give it up. I've been ill for 3 years, and my only concern is whether I'll survive. \u0026rdquo; (C5).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eFocusing on the Present\u003c/h2\u003e \u003cp\u003eThe patients in this group all stated that the current important task was to cooperate with the medical team, and they had no energy or willingness to ruminate about the past or think about the future. \"I don't dare to think about the future. Just like fighting monsters, I don't know if I will be eaten by the monster (disease) tomorrow.\" (C15). \"Occasionally, I recalled the past life, but it would make me feel very down, so I forced myself not to think about it.\" (C12) .Eager to solve the current symptoms, the patients hoped to improve the current quality of life, \"It hurts too much, and it's very uncomfortable every day. Is there any way to relieve it?\" (C17) \"I'm very weak and have no strength. I don't eat well. What should I do?\" (C7).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eLife Reorganization\u003c/h2\u003e \u003cp\u003eSince patients were affected by treatment and symptom distress, their daily lives needed to be reorganized. Many adjusted their work and study plans, changed their eating habits, and increased their rest time. For example, C3: \"I used to love eating spicy things, but now, on the one hand, I can't eat well, and on the other hand, the doctor doesn't allow it.\" \"I don't think about career planning anymore. I just want to rest well and treat well now.\" (C15). At the same time, they also needed to adapt to the life rhythm of frequently going to the hospital for treatment. All 18 patients were from outside of Shanghai. Seeking medical treatment from other places and frequently traveling to and from the hospital has become an essential part of their daily lives. This adaptation process was not only a test of the patient\u0026rsquo;s physical and psychological conditions, but also a trial for coping ability.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eSeeking and Grateful Feedback\u003c/h2\u003e \u003cp\u003eThis meant that during the course of the illness, patients would actively seek supports from family, friends, medical teams and fellow patients, and were also willing to share the experiences with other patients.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eSocial Supports\u003c/h2\u003e \u003cp\u003eThe support sought by the patients in this group came from close family members, close friends, and the main medical team. This kind of support could not only help them cope with physical challenges but also relieve their psychological stress. For example, C11 revealed: \"My wife has been with me and encouraged me\u0026hellip;My daughter has been asking for leave to accompany me to see a doctor\" (C13). All the patients in this group stated that because extranodal NKT cell lymphoma is very rare, they learned through multiple channels that Dr. Tao (the attending doctor) and his team have rich treatment experiences, which gave them greater confidence and hope.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003eShame and Escape\u003c/h2\u003e \u003cp\u003eThe nasal type and skin type accounted for the vast majority of the patients in this group. Appearance damage, bad smell, were important reasons that caused patients to feel ashamed or embarrassed. One of the patients mentioned that her appearance was very important to her, and obvious symptoms would cause insecurity (C5). Two patients reported that due to these insecurities, they avoided social activities (C5, C6). There were also two patients with cutaneous lymphoma (C10, C21) who were often told to pay attention to sun protection and not to expose their skin to the sun for too long, so they preferred to stay at home alone and avoided going out. At the same time, some patients (C10, C18) noticed that people kept them away from patients, thinking that they had contracted a certain infectious disease, and people were afraid of being infected. Patients would also worry about discrimination from the outside world and demonstrate increased social withdrawal behavior.\u003c/p\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003eGrateful Feedback\u003c/h2\u003e \u003cp\u003eAll the patients in this group expressed their willingness to share their disease-fighting experiences and mental journey to provide support and encouragement for other patients. For example, C20: \"This disease is too rare. I hope that through my description, I can help others\", \"I have taken a long and wrong way. I hope that through my experience, others can take fewer detours\" (C14). Most, especially younger patients, proposed that if a patient group or a public welfare organization for extranodal NKT cell lymphoma could be established, it would be able to popularize the prevention and rehabilitation of this disease.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study explored the illness experience and quality of life of patients with extranodal NKT cell lymphoma through semi-structured interviews which is consistent with previous research conclusions. Some studies have confirmed that cutaneous lymphoma has a significant impact on the physiological, psychological and social fields of patients, and greatly affects their quality of life (Beynon et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2015\u003c/span\u003e; Ottevanger et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). Pain, fatigue, pruritus, and eating difficulties are the most reported physical symptoms in this study, which have a negative effect on the quality of life, such as insomnia and poor nutritional status. Earlier studies have also described the direct correlation between symptoms burden and quality of life in patients with malignant tumors (Ottevanger et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Serrano et al., \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e2018\u003c/span\u003e).Therefore, personalized symptom management strategies are urgently needed to manage various somatic symptoms in patients with extranodal NKT cell lymphoma.\u003c/p\u003e \u003cp\u003eDiagnostic delay is a common problem encountered by patients with extranodal NKT, which is consistent with previous research results. This disease is characterized by rarity and the lack of an effective treatment plan. Therefore, patients themselves, including medical workers in remote areas, have a relatively low level of awareness about it, which leads to misdiagnosis. However, misdiagnosis is more likely to cause psychological pressure on patients and affect the timely treatment of symptoms, and the prognosis of the disease(Barke, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2015\u003c/span\u003e). This indicates that in the case of an uncertain diagnosis, a timely referral is necessary. Although it takes some time for patients and their caregivers to accept the reality of a diagnosis, and there is a large psychological gap, previous studies have reported that timely diagnosis of patients with cutaneous lymphoma can effectively alleviate the negative emotions caused by the uncertainty experienced before diagnosis and produce a calm psychological feeling of \"finally settling down\"(Beynon et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2015\u003c/span\u003e; Ottevanger et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2023\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThis study showed that patients with extranodal NKT cell lymphoma reported similar psychological experiences as those with other malignant tumors(Ottevanger et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Penberthy et al., \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2023\u003c/span\u003e), and adopted different coping mechanism. Some patients showed avoidance-oriented coping strategies such as avoiding social interactions, refusing to tell others about their diagnosis, and refraining from searching for disease-related information online. While some patients would adopt adaptive strategies, such as accepting the disease in a timely manner and seeking social supports from family and friends. Previous studies have confirmed that patients who adopt avoidance-oriented coping strategies cannot understand the necessity of treatment and care, and have low compliance(Porkert et al., \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Wahl et al., \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e2013\u003c/span\u003e), while patients who adopt adaptive strategies report more compliance behaviors, which is conducive to the implementation of disease treatment plans(Garchinski et al., \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2014\u003c/span\u003e) .\u003c/p\u003e \u003cp\u003eThis study demonstrated that the high symptom burden of extranodal NKT cell lymphoma has a significantly negative impact on the daily life of patients, mainly manifested in the form of changes in career planning, abilities, and daily hobbies likely associated with pain, fatigue, image damage, and physical condition decline. In this study, the focus of patients is on themselves and the present, which is consistent with J Kabat-Zinn\u0026rsquo;s definition of ' mindfulness ' as: a kind of awareness, that is, a kind of awareness that emerges by purposefully focusing on the present and uncritically aware of the experience presented by one moment after another (Kabat-Zinn, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e2010\u003c/span\u003e). A comparative study of mindfulness-based cancer rehabilitation and supportive expressive group therapy found that mindfulness therapy is a long-term effective adjuvant therapy tool for breast cancer patients, which can effectively alleviate the negative emotions of patients(Carlson et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2016\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThis study found that some patients had more social withdrawal behaviors due to the obvious sense of shame, which is consistent with the conclusion of previous studies. Stigma is the main influencing factor of the social isolation level in colorectal cancer patients (Lim et al., \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Wang et al., \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). Colorectal cancer patients are often reluctant to go out, interact with people, prefer to stay away from social groups, and have different degrees of alienation from surrounding people and society because of the stigma brought by the disease itself (Lim et al., \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). It is suggested that patients can pay attention to their own bodies, emotions and feelings by continuously strengthening the training of this awareness, thereby reducing unhelpful, non-judgmental overreactions and incenting self-reflection to alleviate negative emotions.\u003c/p\u003e \u003cp\u003eStudies have found that family is the main source of psychological support for patients with malignant tumors during radiotherapy and chemotherapy (Brajković et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Pape et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Family members can provide patients with explanations, communication and suggestions. The most important thing is to convey comfort and security, and provide methods for patients to accept themselves correctly(Brajković et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). The support of professional medical staff, especially in the early stage after discharge, can effectively improve the negative emotions of patients(Pape et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2021\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec27\" class=\"Section2\"\u003e \u003ch2\u003eImplications for nursing\u003c/h2\u003e \u003cp\u003eOur study provides important insight for nurses working with cancer patients, especially rare cancer, in the management of patient care and treatment. It reveals that the psychosocial and physical burden and needs of patients struggling with this life threatening disease are inseparable from each other. Firstly, it is are necessary for nurses to use some assessment tools to firstly identify various symptoms before intervention. For example, based on the patient-reported outcome (PRO), which is now widely used in clinical practice and has reliable reliability and validity. Because based on the patient\u0026rsquo;s own evaluation of their functional status, it may better reflect their quality of life. Secondly, nurses should pay attention to assessing patients' perceptions of the disease and the coping strategies they prefer to adopt. Sufficient patient education and information support care can effectively improve the self-management of symptoms and the quality of life of patients by promoting the adoption of adaptive coping strategies. Thirdly, it is necessary for medical staff to use teaching resources, interactive dynamics and patient groups to provide educational activities to encourage patients to participate in patient activities, promote experience exchanging, and help patients increasing their sense of belonging and confidence in disease and symptom management.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eOur study revealed extranodal NK-/T- cell lymphoma can have a profound effect on patients. While there are positive aspects to psychological and relational impact is significant. Diagnosis delay, symptom burdens and the experiences of caring trigger physical challenges, the psychological stress and reorganization and adaptation of daily life, which give a broad insight into the profound impact of support patients, easily accessible services are needed to improve their quality of life. That includes timely diagnosis, providing psychological supports and information, understanding the patient adjustment and adaptation process, and management of symptoms.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\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\u003eDemographic information of the research participants (n\u0026thinsp;=\u0026thinsp;8).\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"10\"\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 \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 \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c10\" colnum=\"10\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipant\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSex\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eLevel of Education\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarital Status\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eOccupation\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eMedical Payment\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003eLesion Site\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\"\u003e \u003cp\u003eTime since diagnosis(months)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c10\"\u003e \u003cp\u003eStage\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior high school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eFarmer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e53\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePrimary school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eFarmer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCharged Medical Service\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eOropharynx\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅡ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHigh school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eDriver\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eTonsils\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e37\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior college\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eClerk\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCutaneous\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior college\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eClerk\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCharged Medical Service\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eOropharynx\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e75\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTechnical secondary school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRetired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eShanghai Municipal Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅡ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior high school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eUnemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eShanghai Municipal Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e84\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHigh school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eUnemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCharged Medical Service\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅠ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e47\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior college\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eSales\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCharged Medical Service\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eHypopharynx\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅡ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e42\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBachelor's Degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eTeacher\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCharged Medical Service\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCutaneous\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e76\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior high school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRetired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eShanghai Municipal Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCutaneous\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHigh school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eClerk\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCharged Medical Service\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e58\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePrimary school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eFarmer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCutaneous\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e55\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior high school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRetired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type、testicles\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBachelor's Degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eUnemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type、eyeball\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e 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colname=\"c9\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior college\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eAccountant\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBachelor's Degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eTeacher\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eNasal-type\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅡ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBachelor's Degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eClerk\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eFace\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eJunior college\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eClerk\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eOropharynx\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e57\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePrimary school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eRetired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eRemote Medical Insurance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCutaneous\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c10\"\u003e \u003cp\u003eⅣ\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u0026nbsp;\u003c/strong\u003eThe authors would like to thank all participating extranodal NK-/T- cell lymphoma patients for their valuable contributions to this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contribution \u0026nbsp;\u003c/strong\u003eP.L. concepted and designed the study. H.P.L. and N.N.G. performed data collection. H.P.L and S.M.G performed data analysis. H.P.L. wrote the first draft of the manuscript. All authors critically reviewed and revised the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding \u0026nbsp;\u003c/strong\u003eThis study was sponsored by the Nursing Talents Project of Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine (xhlgg007).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval\u003c/strong\u003e\u0026nbsp; Ethical approval was received from the Ethics Committee of Xinhua Hospital Affiliated to Shanghai Jiaotong University School of Medicine (IRB No. XHEC-D-2024-107 prior to study initiation and the study was conducted in accordance with the Declaration of Helsinki.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate\u0026nbsp;\u003c/strong\u003e Written informed consent was obtained from all individual participants included in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u0026nbsp; \u0026nbsp;The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eAu, W. 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S., Cook, J. R., et al. (2022). The International Consensus Classification of Mature Lymphoid Neoplasms: a report from the Clinical Advisory Committee. \u003cem\u003eBlood, 140\u003c/em\u003e(11), 1229-1253. https://doi.org/https://doi.org/10.1182/blood.2022015851\u003c/li\u003e\n \u003cli\u003eCarlson, L. E., Tamagawa, R., Stephen, J., et al. (2016). Randomized-controlled trial of mindfulness-based cancer recovery versus supportive expressive group therapy among distressed breast cancer survivors (MINDSET): long-term follow-up results. \u003cem\u003ePsychooncology, 25\u003c/em\u003e(7), 750-759. https://doi.org/https://doi.org/10.1002/pon.4150\u003c/li\u003e\n \u003cli\u003eCosta, R. O., Pereira, J., Lage, L., et al. (2023). Extranodal NK-/T-cell lymphoma, nasal type: what advances have been made in the last decade? \u003cem\u003eFront Oncol, 13\u003c/em\u003e(1175545). https://doi.org/http://doi: 10.3389/fonc.2023.1175545\u003c/li\u003e\n \u003cli\u003ede Leval, L., Feldman, A. L., Pileri, S., et al. (2023). Extranodal T- and NK-cell lymphomas. \u003cem\u003eVirchows Arch, 482\u003c/em\u003e(1), 245-264. https://doi.org/https://doi.org/10.1111/bjd.13841\u003c/li\u003e\n \u003cli\u003eElo, S., \u0026amp; Kyng\u0026auml;s, H. (2008). The qualitative content analysis process. \u003cem\u003eJ Adv Nurs, 62\u003c/em\u003e(1), 107-115. https://doi.org/https://doi.org/10.1111/j.1365-2648.2007.04569.x\u003c/li\u003e\n \u003cli\u003eGarchinski, C. M., DiBiase, A. M., Wong, R. K., et al. (2014). Patient-centered care in cancer treatment programs: the future of integrative oncology through psychoeducation. \u003cem\u003eFuture Oncol, 10\u003c/em\u003e(16), 2603-2614. https://doi.org/https://doi.org/10.2217/fon.14.186\u003c/li\u003e\n \u003cli\u003eGraneheim, U. H., \u0026amp; Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. \u003cem\u003eNurse Educ Today, 24\u003c/em\u003e(2), 105-112. https://doi.org/https://doi.org/10.1016/j.nedt.2003.10.001\u003c/li\u003e\n \u003cli\u003eHaverkos, B. M., Pan, Z., Gru, A. A., et al. (2016). Extranodal NK/T Cell Lymphoma, Nasal Type (ENKTL-NT): An Update on Epidemiology, Clinical Presentation, and Natural History in North American and European Cases. \u003cem\u003eCurr Hematol Malig Rep, 11\u003c/em\u003e(6), 514-527. https://doi.org/https://doi.org/10.1111/bjd.13841\u003c/li\u003e\n \u003cli\u003eKabat‐Zinn, J. (2010). Mindfulness-Based Interventions in Context: Past, Present, and Future. \u003cem\u003eClinical Psychology Science \u0026amp; Practice, 10\u003c/em\u003e(2), 144-156. https://doi.org/ https://doi.org/10.1093/clipsy.bpg016\u003c/li\u003e\n \u003cli\u003eLim, C. Y. S., Laidsaar-Powell, R. C., Young, J. M., et al. (2021). 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Qualitative Data Analysis: A Methods Sourcebook. \u003cem\u003eSAGE Publications Ltd (CA)\u003c/em\u003e.\u003c/li\u003e\n \u003cli\u003eOttevanger, R., Feenstra, J. S., van Vliet, L. M., et al. (2023). Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T-cell lymphoma on quality of life. \u003cem\u003eSkin Health Dis, 3\u003c/em\u003e(6). https://doi.org/ https://doi.org/10.1002/ski2.300\u003c/li\u003e\n \u003cli\u003eOttevanger, R., van Beugen, S., Evers, A. W. M., et al. (2022). Itch in patients with cutaneous T-cell lymphoma as a quality of life indicator. \u003cem\u003eJAAD Int, 9\u003c/em\u003e, 57-64.\u003c/li\u003e\n \u003cli\u003ePape, E., Vlerick, I., Van Nieuwenhove, Y., et al. (2021). 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Psychological distress of cancer patients caused by treatment delay during the COVID-19 pandemic in China: A cross-sectional study. \u003cem\u003ePsychooncology, 31\u003c/em\u003e(9), 1607-1615. https://doi.org/ https://doi: 10.1002/pon.5946.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"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":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"extranodal NK-/T- cell lymphoma, quality of life, qualitative study, experience","lastPublishedDoi":"10.21203/rs.3.rs-4701973/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4701973/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e \u003cp\u003eTo understand in greater depth patients\u0026rsquo; experiences of living and coping with extranodal NK-/T- cell lymphoma, and to inform the development of models of care for this population.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA qualitative descriptive approach including face to face interviews with semi-structured questions was applied in the study. The interviews were audio-recorded and transcribed verbatim.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eTwenty-one patients were interviewed from December 2019 to May 2023. Four key themes emerged: (1) physical challenges and adaptation (symptom burden, shift in social roles); (2) psychological stress and adjustment (denial and anger, delayed diagnosis, and coping with psychological stress); (3) reorganization and adaptation of daily life (focusing on their illness, focusing on the present, and life reorganization); and (4) seeking and feedback of social support (social support, shame, escape, and grateful feedback).\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThe findings gave a broad insight into the profound impact of extranodal NK-/T- cell lymphoma. To support patients, easily accessible services are needed to improve their quality of life. That includes timely diagnosis, providing psychological support and information, understanding the patient adjustment and adaptation process, and management of symptoms.\u003c/p\u003e","manuscriptTitle":"Lived Experience of Patients during Treatment of Extranodal NK-/T- Cell Lymphoma: A Phenomenological Inquiry","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-08-05 05:26:31","doi":"10.21203/rs.3.rs-4701973/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorAssigned","content":"","date":"2024-08-14T19:41:27+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-07-11T11:13:13+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2024-07-08T01:35:22+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"183b1ce0-9c40-43ac-8cdd-5b3bae591c43","owner":[],"postedDate":"August 5th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2024-08-16T03:39:02+00:00","versionOfRecord":[],"versionCreatedAt":"2024-08-05 05:26:31","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4701973","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4701973","identity":"rs-4701973","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}