ORIGINAL RESEARCH published: 01 July 2021 doi: 10.3389/fpubh.2021.687675 “This Graft-vs.-Host Disease Determines My Life. That’s It.”—A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany Mira Parisek 1 , Julika Loss 2 , Ernst Holler 3 , Anna Barata 4,5,6 , Daniela Weber 3 , Matthias Edinger 3 , Daniel Wolff 3 , Helene Schoemans 7,8 and Anne Herrmann 9,10* 1 Faculty of Medicine, University of Regensburg, Regensburg, Germany, 2 Department for Health Behaviour, Robert Koch Institute, Berlin, Germany, 3 Department of Hematology and Internal Oncology, University Hospital Regensburg, Regensburg, Germany, 4 Department of Hematology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain, 5 Josep Carreras Leukemia Research Institute, Barcelona, Spain, 6 Department of Health Outcomes and Behavior, Tampa, FL, United States, Edited by: 7 Department of Hematology, Universitaire Ziekenhuizen Leuven, Katholieke Universiteit Leuven, Leuven, Belgium, Michael Ekubu Otim, 8 Department of Public Health and Primary Care, Katholieke Universiteit Leuven, Leuven, Belgium, 9 Department for University of Sharjah, United Epidemiology and Preventive Medicine, Division of Medical Sociology, University of Regensburg, Regensburg, Germany, Arab Emirates 10 School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia Reviewed by: Mariela Deliverska, Medical University Sofia, Bulgaria Background: Allogeneic hematopoietic stem cell transplantation (alloHSCT) is Krzysztof Kaczmarek, the only curative treatment modality for many patients affected by hematologic Medical University of Silesia, Poland malignancies. However, it can cause debilitating long-term effects. Understanding *Correspondence: Anne Herrmann the impact of alloHSCT on all aspects of the patients’ life is required for optimal anne.herrmann@ukr.de survivorship management. Specialty section: Aim: To explore in-depth HSCT-survivors’ experiences and needs post-transplant. This article was submitted to Partners were included to provide further information on survivors’ needs and how care Health Economics, could be improved in this area. a section of the journal Frontiers in Public Health Methods: We conducted semi-structured face-to-face and phone interviews with Received: 29 March 2021 alloHSCT-survivors and their partners referred to a survivorship clinic in Germany. Accepted: 24 May 2021 Published: 01 July 2021 Theoretical sampling was used to recruit participants. Data were analyzed using Citation: framework analysis. Parisek M, Loss J, Holler E, Barata A, Results: Thirty-two survivors (consent rate: 100%, response rate: 100%) and eighteen Weber D, Edinger M, Wolff D, Schoemans H and Herrmann A (2021) partners (consent rate: 84%, response rate: 72%) participated. Survivors were aged “This Graft-vs.-Host Disease between 25 and 68 years (Median: 48, IQR: 25.3) and partners were aged between Determines My Life. That’s It.”—A Qualitative Analysis of the Experiences 26 and 64 years (Median: 54, IQR: 16, SD: 12.8). The themes emerging from the data and Needs of Allogenic Hematopoietic involved survivors’ needs included (i) the diversity of long-term treatment side-effects; Stem Cells Transplantation Survivors and (ii) time post discharge as a dynamic process with individual peaks of burden. in Germany. Front. Public Health 9:687675. Survivors and their partners also suggested strategies for mitigating these unmet needs, doi: 10.3389/fpubh.2021.687675 i.e., (iii) transparent communication and patient empowerment; and (iv) improvement Frontiers in Public Health | www.frontiersin.org 1 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life in continuity of care system and help with claiming social benefits as cornerstones of optimal survivorship care. Conclusion: To our knowledge, this is one of the first qualitative studies focused on the views of German alloHSCT-survivors on the long-term effects of alloHSCT and the first study integrating the view of their partners. Healthcare providers could better support survivors with managing their symptoms and adhering to their prescribed care by ensuring comprehensive, transparent communication that helps increase survivors’ understanding and involvement in their care. Further efforts should be made to provide patient-centered, continuous survivorship care that involves additional support with navigating the healthcare and social service system. Intervention studies are required to test the effectiveness of the suggested strategies. Keywords: allogeneic hematopoietic stem cells transplantation, survivorship, patients view, framework analysis, qualitative research, GvHD INTRODUCTION self-management and adherence to their prescribed care (15) little is known about survivors’ perspective on how long-term Allogeneic hematopoietic stem cell transplantation (alloHSCT) effects of alloHSCT impact on their lives, and how healthcare is the only curative treatment modality for many patients providers could better help them manage their symptoms and affected by a number of hematological disorders, both malignant care (16, 17). For example, Laidsaar-Powell et al. conducted a and non-malignant, including high-risk leukemia, lymphoma, recent review on adult cancer survivors and found that compared myelodysplastic syndrome and myeloproliferative disorders (1– to other common cancers with relatively high survival rates, 3). Around 20,000 patients receive alloHSCT in Europe each such as breast or prostate cancer, there is considerably little year with approximately half of them developing some form evidence about the perceptions and experiences of survivors of of acute and/or chronic graft-vs.-host disease (GvHD) (4). In hematological cancers, particularly with regard to the long-term 2020, more than 4,000 patients were treated with alloHSCT in effects of alloHSCT, such as cGvHD (18–20). Germany, receiving care in one of more than 60 specialized One of the crucial resources in coping with the long-term treatment centers. The vast majority of these treatment centers sequelae of transplantation are resorting to support from partners are part of university hospitals providing tertiary healthcare (21). Partners commonly help survivors recall information to both inpatients and outpatients (4). AlloHSCT involves delivered by their treating clinicians, provide guidance on chemotherapy and/or radiation therapy (conditioning), followed treatment decision making and support survivors with managing by the infusion of hematopoietic stem cells. Various adverse their care and doing daily activities post discharge (22). Partners effects may appear from conditioning and particularly from can provide important additional information on survivors’ the transplantation itself, including transplant related organ needs and wishes as they are often the most important part dysfunction, secondary malignancy, and serious infections. of survivors’ social network and one of their main sources Managing these multiple complications are quite challenging of information, advice and support (22–24). Also, involving for both physicians and survivors (5–7). A recent review of survivors’ supportive others, are cornerstones of optimal patient- observational and intervention research focused on the unmet centered care which has become the gold standard of care needs among patients with hematologic cancers and concluded delivery (25, 26). However, only few studies include data that HSCT is a risk factor for great unmet needs (8). Boyes et al. provided by partners, and to our knowledge, none has focused found that patients with hematologic cancers also experience specifically on the long-term needs and wishes of alloHSCT- higher levels of psychological morbidity including symptoms of survivors and also included their partners’ views in relationship anxiety and depression, compared with patients diagnosed with to survivors’ needs and care using a qualitative approach (27). other common cancer types, such as breast or prostate cancer (9). Most studies in this area investigate specific aspects of survivors’ AlloHSCT can further cause a number of long-term effects and partners’ needs such as QoL, focus on partners’ own needs on survivors, including chronic GvHD (cGvHD) which affects or use quantitative methods to explore survivors’ and partners’ up to 50% of survivors (10). This immunological disorder can views (28). impact on almost every organ system leading to a variety of Research is needed that examines the dynamics and symptoms, such as skin sclerosis, dry eyes and inflammation interrelation of survivors’ and their partners’ views, experiences of the oral mucosa. Long-term toxicity may also impair and needs related to optimal survivorship care following neurocognitive function, bone density among other symptoms alloHSCT (20). Qualitative research is particularly suited to and thereby limit physical functioning and quality of live (10, 11). fill this gap as it provides valuable in-depth insights into Due to improvements in treatment modalities and decreasing survivors’ perceptions of their care and thus enhances our mortality rates following HSCT the number of survivors is understanding of existing quantitative data on hematological increasing (12–14). While many HSCT-survivors struggle with cancer survivors’ views (29). Conducting qualitative research can Frontiers in Public Health | www.frontiersin.org 2 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life further help discover areas for improvement of care and inform by a member of the research team to schedule the interview. the development of interventions to help survivors better cope Participants provided written informed consent by returning the with their symptoms (30, 31). Yet, only few qualitative studies signed consent form. Survivors’ were asked whether they had explored alloHSCT-survivors’ experiences post-transplant (19, a partner and if so, whether their partner would be willing to 32–37), with many of them focusing on survivors of leukemia or attend the interview. Survivors or partners were excluded after lymphoma (33). Also, there is still a lack of research on how care three unsuccessful attempts to contact them or if they declined to in this area could be improved and, to our knowledge, very few participate due to time constraints. qualitative studies have focused on the views and perceptions of Theoretical sampling was conducted. Thus, initial consecutive European alloHSCT-survivors taking into account that findings data collection from clinic lists and analysis informed later from other contexts may not be generalizable due to differences recruitment to provide a maximum variation sample (42). Thus, in healthcare settings and services. We therefore performed survivors from various age and gender groups, as well as qualitative semi-structured interviews with German alloHSCT- different socio-economic and disease-related backgrounds were survivors and their partners to provide in-depth insights into recruited to collect heterogeneous cases in order to compare and survivors’ views on how long-term effects of alloHSCT impact on progress the initial codes and categories (43). Ethical approval their lives, and how healthcare providers could better help them was granted by the local research ethics committee (approval no.: manage their symptoms and care. 19-1306-101). METHODS Data Collection Participants could choose whether to conduct the interview Aims face-to-face or via phone to reduce research-related burden This study explored in-depth the alloHSCT-survivors’ on participants. Since the start of the COVID-19 pandemic, experiences and needs post-transplant. Partners were included all participants have opted for phone interviews. Interviews to provide further information on survivors’ needs and how care were conducted by two interviewers (MP and AH), either one- could be improved in this area. on-one or with survivors and partners interviewed together. Consent was requested to record and transcribe the interviews. Study Design Participants were advised that they had the possibility to stop Semi-structured face-to-face and phone interviews with or to postpone the interview at any time. At the beginning alloHSCT-survivors and their partners were conducted. of each interview participants were asked to talk about the impact the transplant had on their lives. This open stimulus Participants helped elicit the myriad of factors associated with the time Survivors were eligible for this study if they (i) had received post-transplant. The narrative was followed by semi-structured alloHSCT between 1 and 5 years prior to recruitment, (ii) were questions examining topic areas not raised about by participants aged 18 years or older, (iii) were relapse-free after alloHSCT, (iv) initially. Topic areas included physical and emotional well- were German speaking, (v) and visited the Dept. of Hematology being and needs, information provided to survivors along the of the University Hospital of Regensburg for routine follow-up care continuum, difficulties in daily routine and practical issues visits or second opinion at the GVHD clinic. Survivors were able (such as keeping the household or baying bills), impact on to participate regardless of their partner participation to ensure relationships, and social and medical support provided by the that the views of single survivors were also included in this study. healthcare team (for detailed information in each topic area The period of 1–5 years post alloHSCT was chosen as the first please see the interview guide provided in Appendix 1). Partners year after alloHSCT is often characterized by acute complications were prompted to add to the survivor’s narratives if they felt on treatment and thus not representative for long-term effects they would like to elaborate on certain aspects further. The and outcomes of alloHSCT-survivors. The 5-year limit has interview guide was developed by the research team based been traditionally seen as a benchmark for cancer survivorship on a review of the literature and further interdisciplinary indicating a time where cancer recurrence becomes less likely discussion. It was also informed by the Supportive Care (38–41). We only included relapse-free survivors as a relapse Framework (44). The framework was developed as a tool for often leads to a disruption of care which is then not focused on cancer care professionals to help identify the type of support survivorship but treatment of the underlying condition. cancer survivors may require and how to meet these needs Partners were (i) identified by survivors as their partners, in healthcare service delivery (44). Employing a theoretical (ii) aged 18 years or older (iii) German speaking, and (iv) framework helped summarize and integrate existing knowledge judged by clinic staff and the research team to be physically or on supportive care to provide guidance for research and clinical mentally capable of completing the interview and signing the practice specific to the experiences and needs of alloHSCT- consent form. survivors (45). Recruitment Data Analysis Participants were recruited between November 2019 and June All interviews were transcribed verbatim. Data were analyzed 2020. The attending physician identified all eligible patients based using the framework method which is a systematic approach for on clinic records and asked for their consent to be contacted examining commonalities and differences in qualitative research Frontiers in Public Health | www.frontiersin.org 3 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life data (46). It allows to provide highly structured outputs by TABLE 1 | AlloHSCT survivors’ sociodemographic and disease summarizing descriptive and explanatory data and categorizing related characteristics. this data into developed topics (46). At the beginning of the Characteristics Survivors analysis, the data were read intensively to identify generic terms N 32 In % that were clustered into categories (46). This step is called “open coding” and involves translated passages of the transcribed Gender interview into key messages, which are then grouped into Female 16 50% categories. The developed system of categories was discussed and Male 16 50% double-checked within the research team. Once the system of Nationality categories (“the framework”) had been agreed on, the content German 31 97% of all interviews was scanned to assign further data to the Others 1 3% framework (46). If additional topics repeatedly appeared, the Median Age in years (SD) 48.0 14.1 analytical framework was constantly revised and completed 18–39 y 11 34% until a final category-system was achieved (i.e., no additional 40–59 y 11 34% new information arising). Again, the system of categories was 60+ y 10 31% discussed by the research team. This dynamic and iterative Material status categorization allowed for the analysis of data in a detailed Married 21 66% manner and enabled us to establish links between the categories. Stable Relationship 4 13% The final output of the analysis was summarized in the form of themes which were developed by interrogating the categories Single/widowed 7 22% through comparison within and between interviews in order Highest level of education to form interpretive concepts that describe or explain certain No university degree* 22 69% aspects of the data (47). University degree 10 31% Occupation Full-time 6 19% RESULTS Part-time 9 28% None/pension 15 47% Thirty-two survivors and twenty-five partners were approached Children (seven patients indicated that they were not in a relationship). All Non-Adult Children 12 38% survivors agreed to participate, and eighteen partners contributed Adult Children 8 25% to the study (consent rate: 84%, response rate: 72%). Reasons for None 12 38% declining study participation were time constraints (n = 5) or Median Time post HSCT in years (SD) 2.5 1.1 lack of interest in this study (n = 2). Survivors were aged between 1–2 y 8 25% 25 and 68 years (Median: 48; IQR: 25.3; SD: 14.1) and partners 2–3 y 15 47 % were aged between 26 and 64 years (Median: 54; IQR: 16). The 3–4 y 3 9% median time since allogenic HSCT was 2.7 years (range: 1.2–5 4–5 y 6 19% years, IQR: 1.3, Tables 1, 2). Interviews lasted between 25 and 88 min (Median: 50.4, IQR: 25.2). Diseases The themes that emerged from the data of survivors and Acute myeloid leukemia 9 28% partners were grouped around needs, i.e., (i) the diversity of long- Acute lymphoblastic leukemia 7 22% term treatment side-effects as a major challenge in alloHSCT Non-Hodgkin Lymphoma 5 16% survivorship care; (ii) time post discharge as a dynamic process Chronic myeloid leukemia 3 9% with individual peaks of burden; and strategies for clinical Lymphoma 2 6% practice to meet these needs, i.e., (iii) transparent communication Myeloproliferative disease 2 6% and support with patient empowerment; and (iv) continuity Inborn immunodeficiency 2 6% in the care system and help with claiming social benefits as Others 2 6% cornerstones of optimal survivorship care. These themes are cGvHD at time of interview (clinician reported) described in detail below. None 10 31% A summary of the themes and suggestions for how to improve Mild 2 6% care can be found in Table 3. Moderate 9 28% Severe 11 34% Diversity of Long-Term Treatment *Year 10 or lower, A levels. Side-Effects as a Major Challenge in alloHSCT Survivorship Care Survivors and partners reported great diversity of long-term side- they indicated that such care should ideally be provided by a effects of alloHSCT and varying degrees of burden caused by clinic or center that is specialized in this area. Survivors attending each side-effect of treatment. Given the complexity of GvHD specialized clinics felt that they received care that was more Frontiers in Public Health | www.frontiersin.org 4 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life TABLE 2 | Partners’ sociodemographic characteristics. in lasting visible transformations of different parts of the skin. A number of survivors reported having “typical GvHD spots” Characteristics Survivors (female survivor, 57 years, two and a half years post alloHSCT) N 18 In % and described a great degree of suffering from a very dry and sometimes itchy feeling, getting worse during sun exposure. Gender Some participants reported that the mucous membranes of the Female 12 67% Male 6 33% intimate area were affected by the GvHD causing pain during Nationality sexual intercourse. German 18 100% Median Age in years (SD) 54.0 12.8 “It doesn’t hurt, but it is so visible – skin looks like parchment and 18–39 y 4 22% it dries out relatively quickly. [...] and then I have these spots. This 40–59 y 9 50% was the first thing that we noticed.” (male survivor, 36 years, three 60+ y 4 22% years post alloHSCT) Highest level of education “My mucous membrane was quite affected. It was as if my No university degree* 12 67% vagina was glued together.” (female survivor 47 years, four years University degree 6 33% post alloHSCT) Occupation Full-time 8 44% Even though cutaneous cGvHD is a common problem, the Part-time 5 28% perceived burden caused by this complication varied significantly None/pension 5 28% Living with patient between survivors. Women often reported being more concerned Yes 18 100% about visible transformations of their body than men and reported “not feeling attractive” anymore (female survivor, 46 *Year 10 or lower, A levels. years, 2 years post alloHSCT). Compared to male survivors, women also seemed to struggle more with the side-effects of long-term corticosteroids treatment, such as weight gain or TABLE 3 | Main themes and suggestions for clinical practice. facial oedema. Issues mentioned Possible approaches “My skin is covered with brown spots. They are scars, they won’t go Diversity of long-term 1. Increased education of survivors and away anymore. It is particularly bad when that happens on the neck treatment side-effects as a support persons about side-effects and in the face. [. . . ] Especially for me as a woman it is not so easy major challenge in alloHSCT of alloHSCT prior to transplant and to come to terms with that.” (female survivor, 57 years, two and a survivorship care guidance on how to identify and half years post alloHSCT) communicate concerns and wishes You feel bad anyway as a cancer patient, without hair and so on. Time post discharge as a 2. Continuing medical education on how dynamic process with to provide specialized care post- And after the transplant your whole appearance changed. And then individual peaks of burden transplant you don’t want to take cortisone in huge doses because you gain 3. Provision of individually tailored 20 kilos. [. . . ] It is the outward appearance especially for women. survivorship care plans and easy You would like to be like you were before [=alloHSCT]. (female access to multidisciplinary care teams survivor, 46 years, two years post alloHSCT) Transparent communication 1. Healthcare provider training in patient- and support with patient centered communication empowerment 2. Fostering patient self-management Even years after receiving alloHSCT, most survivors perceived a through involvement of liaison nurses reduced level of general fitness and self-effectiveness compared to 3. Provision of further publicly available the time prior to the transplant. Some described this as a reduced information about treatment centers capacity to deal with problems of daily life or to do daily activities, 4. Access to revalidation programs (e.g., as online course to reduce risk such as housekeeping or paying bills. Most reported lacking of infection) physical strength, suffering from chronic fatigue and reduced Continuity in the care 1. Patient navigators and bridging cognitive function. Thus, a significant part of survivors found it system and help with nurses to coordinate continuous, hard to concentrate on a task for a longer period of time. They claiming social benefits as individually tailored care, help also struggled with deciding what activities they are capable of cornerstones of optimal navigate social support systems and doing and what would be too much for them. This often resulted survivorship care maintain and strengthen communication and collaboration in having to cancel appointments on a short notice and taking between all member of the numerous breaks during the day. Partners emphasized this loss multidisciplinary care teams of fitness and highlighted survivors’ need to take regular breaks, e.g., in the form of frequent and long naps during the day. tailored to their individual needs and circumstances. The most “I feel a complete lack of energy. When I have to get up the stairs, frequently mentioned complication survivors struggled with was I feel like I have been climbing Mount Everest.” (male survivor, 42 cutaneous cGvHD causing skin erythema, dryness often resulting years, one and a half years post alloHSCT) Frontiers in Public Health | www.frontiersin.org 5 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life “For me the problem was exhaustion, tiredness. [. . . ] I was “On the day of discharge, I was at completely down. I was really unsure how to handle that lack of energy and strength.” (female devastated. My first reaction on the day of discharge, when my survivor, 51 years, two years post alloHSCT) wife picked me up, was: If that [=the cancer] comes back, I “I realize that my diary fills up quickly and then afterwards I won’t go through this again.” (male survivor, 62 years, five years have to cancel appointments because I simply don’t have enough post alloHSCT) energy. And then I have to make sure that I don’t have an “You don’t get any support. You are discharged. Then you are appointment every day, let alone two in a day, that is much too at home. You get your pills and then the nurses and clinicians overwhelming for me.” (female survivor, 57 years, two and a half say: ‘If anything happens, please ring us and you can come in years post alloHSCT) straight away, but that doesn’t help you very much at home.”’ (male “He sleeps a lot - a lot!” (female partner, 65 years) survivor, 62 years, one and a half years post alloHSCT) “I was so used to being among people, always in company. And The majority of survivors who did not suffer from a significant then me being at home on my own [. . . ] that was the worst.” (female change of their outer appearance noticed a discordance between survivor, 47 years, four years post alloHSCT) how their health status was perceived by others and their own experience. This is due to the fact, that many symptoms they face, Partners highlighted survivors’ suffering when coming home, such as fatigue, reduced fitness-levels or mental stress were not particularly due to their dependence on partners’ care. They visible from the outside. Survivors often reported being judged reported helping survivors through this difficult time, especially by others as healthy although they felt physically and emotionally by providing support with coping emotionally with their vulnerable. This made it difficult for a number of survivors to disease and treatment, helping with practical problems, such as explain their supportive others, such as partners, relatives, friends attending clinics, paying bills or keeping the household, and or work colleagues, how they felt and what they struggled with. supporting survivors understand the information provided by Some partners added that the survivors they cared were thus their clinicians and becoming involved in decisions regarding often reluctant to talk to others about their feelings and well- their care. being as they did not wish to have to explain their disease and symptoms. However, they needed to share their thoughts and “I thought: How can we cope? Because he [=the survivor she feelings with someone. In most cases this was their partner who cared for] practically had to be nursed when he came home. And I was already familiar with their situation and did not need further had a job to go to. One of us had to keep up a job.” (female partner, explanation of their diagnosis, symptoms or treatment. 54 years) “I always thought we would overcome this. Of course, sometimes “From the outside you seem healthy, as the acute phase has you struggle. But sometimes you feel joy. (. . . ) We learned to live been over for some time. And the people around you they don’t with the disease. Well, we always have to work on it and learn to be really recognize and understand that there are the negative long- tolerant (. . . )” (female partner, 65 years) term effects (=of alloHSCT).” (female survivor, 44 years, two years “It’s crazy what this does to you (=the alloHSCT). I just post alloHSCT) remember when he came home (=from hospital), he was done. He “Well, you did have the need to talk. I remember last Christmas could hardly walk. I had to shower him, clean the whole house, when you really talked about all of this quite extensively (=your wash the curtains, change the bed sheets every day. It was extreme.” disease and the side-effects of treatment). Do you remember?” (female partner, 49 years) (female partner, 65 years) Due to their reduced level of physical and cognitive function a Time Post Discharge as a Dynamic significant part of survivors and their partners were forced to Process With Individual Peaks of Burden reduce their workload, work part-time or quit work completely. Survivors’ care experience after being discharged from hospital Younger survivors often had to take a break from university was often seen as a dynamic process where individual survivors or vocational training resulting in a great degree distress and experienced various peaks of burden at different stages of the insecurity regarding the future. Apart from the financial struggle, care trajectory, i.e., times that were perceived as particularly having a job meant having a purpose in life for most survivors challenging, both physically and emotionally. A significant part as they wished to perceive themselves as valuable members of of participants reported that these peaks occurred at the time the society. Most survivors who lost their job felt useless, socially of cancer diagnosis, but also at discharge. This was because isolated or bored. survivors felt that leaving the perceived safety provided by the hospital system and arriving back home after receiving alloHSCT “We (=partner and survivor as independent entrepreneurs) fueled their fear of doing something wrong when managing their have limited our working hours so that I can look after my wife.” (male partner, 63 years) symptoms and care. Most survivors also experienced a great “I cannot go to work anymore. It is no longer possible. It is very degree of burden and distress caused by the intermittent nature hard for me to understand that.” (female survivor, 57 years, two and exacerbation cGvHD and lack of response to therapy. Almost and a half years post alloHSCT) all survivors also suffered from having to isolate themselves to “My money has vanished altogether, about 1000 euros per reduce the risk of infections. Not being able to leave their homes month gone. My husband took six months off. Honestly, I have to and being dependent on partners and other family members was say: all our savings were completely used up.” (female survivor, 47 seen as particularly burdensome. years, four years post alloHSCT) Frontiers in Public Health | www.frontiersin.org 6 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life “Every time I went to the letter box I felt anxious because there details of their diagnosis, prognosis and treatment options, others were more bills [. . . ] I didn’t want to make that experience, no one preferred to only receive general information that helped them would.” (female partner, 65 years) understand what happened to them. These survivors felt that too much information would scare them. All survivors appreciated A number of survivors suffered from having to take high doses of if information was given to them in lay-language and in a numerous different types of drugs in order to manage the side- structured manner to ensure survivors and their partners would effects of alloHSCT. They also struggled with the lengthy and not be overwhelmed by the amount of information they received. frequent check-up visits at the clinic. Failed attempts to reduce medication and stagnation in rehabilitation were perceived to be “As a layperson you cannot understand that jargon when you particularly challenging. Some survivors reported that cGvHD get confronted with it. There should be a training program for and trying to manage its symptoms completely took over clinicians to help them to explain something in a way that the their lives, reducing their hope that things might improve and patient can understand.” (female partner, 65 years) impacting their drive to make plans for the future. “You get so much information that you cannot really understand what has just happened. The first information came like a landslide.” (male survivor, 68years, two years post alloHSCT) “[M]y systemic immune suppression has not changed. Every “It’s a very personal thing [=information needs and single tapering strategy has failed. I cannot reduce the high level preferences]. Everybody is different. Clearly there are things I of suppression. That has left me emotionally drained.” (female need to know. But there are also things when I think, just leave survivor, 44 years, two years post alloHSCT) them. I don’t want to know. Yes, I would worry too much.” (female “[W]hen I take these tablets, 26 per day, when I take half of survivor, 68 years, two years post alloHSCT) them in the morning, I feel so sick. I just want to go back to bed. Because all the energy that my body has left is used up in the process of metabolizing the drugs.” (female survivor, 51 years, one and a Some survivors also highlighted the importance of their clinician half years post alloHSCT) being mindful about how they provide information and how “This GvHD determines my life. That’s it. To some extent I have this is received by survivors and partners. A number of lost hope that I will ever be able to reduce all this medication. ” survivors reported that clinicians thought out loud what they saw (female survivor, 57 years, two and a half years post alloHSCT) when examining them or reading their test results. Clinicians often said what they concluded from these examinations or Transparent Communication and Support test results without actually addressing survivors directly or filtering the information in order to make it understandable With Patient Empowerment and less anxiety provoking for not medically trained people. Most survivors indicated that their treating clinicians had Consequently, survivors immediately thought that something told them that receiving alloHSCT would be tough and time- was wrong causing them a great degree of distress that could have consuming. However, they were nevertheless surprised and been prevented by more careful means of communication. sometimes even shocked by the extent and intensity of the treatment side-effects and by how much they would affect their “The ultrasound image showed up something on my thyroid. lives. A significant part of study participants only realized post- And then they [=the treating clinician] say to you: ‘Well, we’ll transplant that alloHSCT would not provide the quick cure they definitely have to investigate that. You were getting radiation wished for, but that the recovery period would be a crucial therapy and some tumors can come back.’ And my reaction was: and burdensome part of their care trajectory. Partners also danger, danger, danger!” (female survivor, 57 years, two and a half highlighted the feeling of not being prepared for the impact the years post alloHSCT) transplant had on the survivors they cared for, particularly the changes on personality, the changes related to their bodies and Many survivors reported not adhering to their prescribed care, the cognitive difficulties they had to cope with post-transplant. e.g., their medication or isolation, as they were overwhelmed by the myriad of instructions and limitations they had to “And I have to admit, I did not expect the treatment integrate into their daily lives. Clarifying the reasons for these complications.” (female survivor, 57 years, two and a half years limitations, prioritizing some over others and providing practical post alloHSCT) recommendations for how to put the instructions into practice “And that was a totally new experience to acknowledge or to learn to acknowledge that you are not cured but that the process were perceived important aspects to help survivors increase of healing was continuing and that the time after the transplant adherence to their prescribed care. Survivors reported that was a very important time.” (male survivor, 62 years, two years liaison nurses provided a lot of support in this area, particularly post alloHSCT) by showing them how to administer medication, answering “From one day to the next I thought there is another man lying questions regarding how to reduce the risk of infection or giving in the room. (. . . ) His head and neck were swollen. I couldn’t believe advice on nutrition. These liaison nurses involved a group of that it was him. It was a shock.” (female partner, 62 years) specially trained nurses who provide tailored follow-up care. The liaison nurses also helped survivors by educating partners Survivors in this study varied greatly in terms of their preferences on the recommended care, as they were the ones who often for the type and the amount of information they wished to implemented the provided guidelines, especially in the period receive. Some wanted their clinicians to provide all available immediately after discharge. Frontiers in Public Health | www.frontiersin.org 7 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life “Maybe not just what you shouldn’t do, but also an explanation wished for courses and fitness plans tailored specifically to their why [=certain things should be done] would be good.” (female specific needs after alloHSCT and guided by a trained instructor. survivor, 51 years, two years post alloHSCT) Survivors also indicated that such programs should be better “I was looking for hours to find the right sunscreen and to check communicated in order to raise awareness among survivors and all the products, to understand the pros and cons and check the treating clinicians. ingredients for those I should stay away from. Maybe you could improve that a bit by making sure you have a product to start with and then you can go and look for others to continue with.” (female “Sport has always been good for me because doing sports also survivor, 51 years, two years post alloHSCT) provides psychological support.” (female survivor, 49 years, two “If we had known that you can eat pealed raw veggies, we would years post alloHSCT) have had a carrot salad or something like that a long time ago. But “When I got home from hospital, I had no energy. But I needed we avoid all of this, just to be safe.” (female partner, 31 years) to get out and (walk) a little bit further every day. I could draw a lot of energy from that. I always say, I am walking away from my illness.” (female survivor,64 years, three years post alloHSCT) Some survivors wished for more information about alternative “I cancelled my sports class because I didn’t go there anymore. medicine and how it could be used to reduce drug-interactions. I can’t do any exercises on the floor anymore due to my hip and Others would have appreciated further details on the clinic they back. And the floor is contaminated, and I don’t want that either. attended, including more comprehensive readily available and Nothing is being done here in X [=city where the survivor lives] . . . trustworthy information on the experience and qualifications of I mean that they should try to offer sports classes that are suited for the clinicians who treated them. This was because most survivors HSCT-survivors.” (female survivor, 57 years, two and a half years felt that centers varied greatly by the quality of care that was post alloHSCT) provided, with some not being perceived to be up-to-date with current clinical guidelines and recommendations on optimal Continuity of Care and Help With Claiming patient-centered communication and care prior, during and post Social Benefits alloHSCT. Some survivors wished for clear, publicly available Being discharged from hospital was particularly challenging for information on each healthcare center, for instance regarding survivors who lived far away from the clinic they were treated the number of transplants administered per year and clinicians’ at. In case of emergency, they often attended an emergency experiences with treating different hematological conditions. department close to their homes where they did not feel their disease and concerns were treated adequately. Some felt that this “I believe that many patients would like to use alternative ways was because of smaller clinics’ lack of experience with providing or means in order to avoid using chemical drugs. And they could do specialized care to alloHSCT-survivors. A number of partners with more support on that.” (female survivor, 51 years, two years reported not having received adequate care when they had to take post alloHSCT) their partner to the nearest emergency department. “I think it is a great problem to find a clinic that doesn’t just do a sufficient number of transplants but also has experience with very different types of disease because that ensures that follow-up “And there is always the fear something could happen. And what care will work well. [. . . ] But that information doesn’t exist. The makes it worse for us: we live 138 km away from X [=place of the public relations department [=of each clinic] writes nice adverts clinic they attended]. [. . . ] What I found most devastating was that on how great everything is and all the things they do at the clinic every time I had to take my husband to the emergency department but quite often there is a lack of information on things like: How [. . . ] the people there didn’t take us seriously and sent us to the many allogenic HSCTs do they do? How many autologous per year? waiting area. And I had to get up and fight for my husband to I don’t know how to improve this but maybe you have to force clinics be treated immediately. Those were the worst moments.” (female to communicate in a more transparent matter. Some people may partner, 59 years) attend the clinic closest to their homes although they won’t receive the best care there.” (female survivor, 57 years, two and a half years A number of participants reported a lack of communication post alloHSCT) between their treating specialists, general practitioners (GPs) and the emergency departments they attended. GPs and local Easy access to appropriate support with physical activity was emergency departments were often not aware of the special seen as another facilitator for optimal survivorship care. Most needs of alloHSCT-survivors resulting in survivors and their survivors found it important to increase their physical fitness partners having to close the gap of communication in order to and felt this would help them cope emotionally with their receive appropriate care. Survivors and partners in our study new situation. They reported that physical activity allowed wished for better information exchange between all members them to increase their self-confidence, optimism and self- of their care team, including primary, secondary and tertiary effectiveness, and receive a welcomed distraction and timeout care clinicians. They suggested continuing education for GPs from daily routines and concerns. Despite this, most struggled as well as better documentation and communication of the with attending open fitness centers or sports classes, since they details of each survivor’s care trajectory. Also, survivors noted the were concerned with the risk of infection and of potentially importance often having the same clinician looking after them crowded exercise areas. Some also felt that open fitness centers during their follow-up check-ups. This allowed them to build may not be sufficiently tailored to their physical and mental a doctor-patient-relationship which is based on mutual trust well-being and may thus expose them to exhaustion. They and helped survivors gain confidence in their prescribed care. Frontiers in Public Health | www.frontiersin.org 8 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life Such a doctor-patient-relationship was also seen as important have financial disadvantages. I don’t have any strength anymore.” condition for survivors feeling confident to talk about openly (female survivor, 64 years, three years post alloHSCT) their individual problems and wishes. “Many hospitals don’t deal with the health insurances directly, they simply don’t want to. That is then left to us. I have to pass “Involving the patient’s GP [=is important]. They should set it on to the right people. [. . . ] I have put the money into a separate aside an hour or two between the GP and the specialist. The GP account, tens of thousands of euros which I transfer into the account is the extended arm [=of the specialist], aren’t they? This would not and then I wait that the health insurer reimburses me for the cost a lot [. . . ] that they know exactly what they are doing.” (male bills.”(female survivor, 64 years, four years post alloHSCT) partner, 48 years) “Every time I build a relationship with a doctor they leave soon Survivors treated by liaison nurses reported that their team after. It is really annoying. Because you always talk a bit about helped them through this difficult time by offering care and yourself. First, the doctor is a stranger to you, then, during the support with questions or concerns they had. The liaison second visit, you start to get to know them, and again during the nurses fostered continuous care by providing survivors and third visit, and when you want to meet them for the fourth time their partners with a list of healthcare providers they could they are gone.” (female survivor, 57 years, two and a half years contact if they needed help with social support or managing their post alloHSCT) care at home. Liaison nurses were also seen as a facilitator for multidisciplinary care involving primary, secondary and tertiary Survivors and partners in our study wished for more tailored healthcare services and maintaining communication between help with claiming social benefits and seeking further practical different members of survivors healthcare team. Survivors and support. They suggested introducing a temporary care level for partners who received this type of care greatly appreciated the the times they struggled most post-transplant.1 Others reported continuing and tailored support. an unmet need for improved access to paid housekeepers and additional sick leave for partners. A significant part of study “And there is this - and I really have to praise it - this wonderful participants suggested that clinics provide a dedicated social system of building a bridge between hospital care and care at home. worker who is familiar with claiming social benefits and can thus There is someone who takes the time to tell us what to look out for support each individual survivor and their partner. They noted at home.” (male survivor, 62years, two years post alloHSCT) that it would be important to have such support during and “You always have the feeling that you can call the team of the post discharge as help with claiming social benefits often stopped liaison nurses if you need to.” (female survivor, 68 years, two and a once survivors left the hospital. As soon as they were back at half years post alloHSCT) home, they often felt left alone with having to communicate “You just feel well looked after within this system of liaison with different authorities and deal with various issues related to nurses.” (female survivor, 46 years, two years post alloHSCT) their health and pension insurances. Given that some clinics did not directly bill their insurers, a number of survivors found it DISCUSSION particularly time-consuming and burdensome having to forward each and every treatment bill to their health insurer themselves. Our report builds on existing evidence (19, 36, 37) and highlights the experiences and needs of hematological cancer survivors “It would be really good if there would be a temporary care level including their partners following alloHSCT in a European for the first six months, so that someone can drop in at your home context of care. Survivors commonly reported the negative once a day.” (female partner, 54 years) impact of late effects and GVHD on their well-being across “What really annoys me was the letter from the pension different stages of survivorship. Notably, survivors also provided insurance. I think my blood pressure went up to 200 [. . . ] I had to new insight into the difficulties associated with accessing get my hips done and then they said: ‘Well, you have two new hips, specialized care, being empowered to self-manage their condition now you can work six hours a day and more.’ And then I thought: and care as well as accessing social benefits they were entitled to. Ok, how should I do that? I cannot stand for a long period of time, Our findings provide new insights into an understudied area of I cannot sit. So, it really doesn’t work.” (female survivor, 57 years, two and a half years post alloHSCT) research and highlight the cornerstones of optimal survivorship “Starting from the pension insurance on to the health insurers, care post alloHSCT. to the benefit agency, and so on. It was an odyssey, it really was. Many survivors and partners see the survivorship trajectory as It is unnecessarily difficult. It should be made easier. And I really “dynamic process” with individual peaks of burden, a diversity of believe that the people who claim something really need it.” (female long-term treatment side-effects and a clear need for transparent partner, 65 years) communication (5, 18, 33). These peaks of burden did not “That [=applying for pension and to receive disability only occur at diagnosis but also at discharge requiring intense allowance] was a mental strain which I couldn’t stand any longer psychosocial follow-up care involving (peer) support groups in the end. Finally, I said to myself I don’t care anymore. I and patient’s advocacy groups. Survivors felt that leaving the don’t want to go on anymore. I do what they say even if I perceived safety provided by the hospital system and arriving 1 In back home after alloHSCT fueled their fear of doing something Germany, the benefits of each person’s long-term health insurance cover are provided in different stages which are also referred to as “levels of care.” wrong when managing their symptoms and care at home. Many These levels of care are based on the severity of each person’s condition and help alloHSCT-survivors in our study struggled with the heightened categorize and classify the health insurance claims made. risk of infection, fatigue, limited fitness and neurocognitive Frontiers in Public Health | www.frontiersin.org 9 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life decline and were reluctant to share their thoughts and concerns Participants in our study also indicated the need for continuity with others than their partners as reported by previous studies of care after leaving the hospital. As also shown by others, (14, 48, 49). They did not feel adequately prepared for this we noted that frequent changes of treating clinicians was transition from acute to chronic disease and struggled with seen problematic as patients struggled with building trust the disruption this caused in their personal life plans and in their clinician and create profound relationships (62). goals. They reported that peaks of burden occurred during They wished for better interdisciplinary documentation and exacerbation cGvHD and lack of response to therapy. This is in communication, for instance through multidisciplinary teams. line with a previous study of Jim et al. describing the intermittent Another way of improving collaboration between clinicians nature of cGvHD as a source of burden and distress and from different disciplines and healthcare services might be highlighting the potential benefit of patient education materials the use of electronic tools, such as electronic health records. to increase knowledge and self-efficacy in dealing with side- A number of studies in other settings suggest that this can effects of alloHSCT (50). It may be helpful to provide further improve quality, safety and continuity of care as well as education of survivors and support persons about the side-effects interprofessional communication through quicker and easier of alloHSCT prior to transplant and deliver guidance on how to access to medical data allowing more efficient and patient- identify and communicate their concerns and wishes, so that they centered care (63–65). Better interdisciplinary documentation can be addressed in a timely manner. and communication may be particularly important when trying A model of care found particularly helpful by our study to improve care for alloHSCT-survivors provided by local participants is the system of liaison nurse, provided in some of emergency departments and GPs, who are often not familiar with the clinics participants attended. This system involves specialized the special needs of alloHSCT-survivors and the requirements for nurses providing individually tailored advice on alloHSCT- optimal care post-transplant. survivors’ supportive care post discharge, including constant Support in gaining social benefits was seen as further low threshold counseling on survivorship issues during the facilitator for optimal alloHSCT-survivorship care given that recovery process post alloHSCT. A number of studies suggest many survivors did not know what they were entitled to that involving liaison nurses can improve the continuity of care and often felt overwhelmed and frustrated when trying to and patient outcomes (51, 52). One of the key elements of obtain social benefits. Our data suggest challenges in claiming involving liaison nurses is that counseling already starts before social security benefits for orphan diseases, such as cGvHD, alloHSCT to help build a solid and continuing relationship before caused by numerous problems. These include difficulties with further medical interventions are required. The need for such understanding the benefits survivors are entitled to, finding the models of care to help manage alloHSCT-survivors cope with responsible authority and contact person and submitting correct their symptoms and care has been highlighted previously (36, 53). applications. Participants need professionals familiar with legal However, more intervention studies are required to examine the provisions and practical aspects of social support to provide effects of such models of care in alloHSCT-survivors and their them with timely information, e.g., prior to the transplant. This partners. Future research should also explore which elements of could involve patient navigators who help survivors with taking- tailored care planning work best in different settings and examine up or returning to employment or complete their education barriers and facilitators to their implementation into routine care. (66). Such navigators would be familiar with the situation of Taken together, our results indicate that care for alloHSCT- each survivor and coordinate their healthcare support. They survivors does not allow a “one-fits-all”-strategy but requires could help engage survivors in proactive roles in their care healthcare service delivery that is tailored to the individual needs management, facilitate transition from hospital to community and circumstances of each survivor. Tailored care post alloHSCT care and improve communication between the members of has been shown to increase survivors’ capacity to self-manage their treatment team (66). Employing patient navigators to help their care and even avoid loss to follow-up (54). McConnell et al. alloHSCT-survivors and their informal caregivers access care and examined different subgroups of cancer survivors highlighting further social support mechanisms could also improve adherence that tailored care planning is a key element in increasing survival, to their prescribed care (66, 67). A recent study of Berezowska treatment success and patient satisfaction levels (55). Wagner et al. found that patient navigation can increase satisfaction et al. also emphasized the importance of tailored care planning with care among survivors and healthcare professionals, improve to support survivors’ self-management and help them and their survivors’ self-efficiency and reduce distress (68). In some supportive others cope with chronic illness (56). Tailored care settings, bridging clinics already take on some of these tasks planning can further enhance health-related quality of life, and help patients claim social benefits. However, there may be a reduce depression and reduce healthcare costs related to visits need support liaison nurses by providing patient navigators who to emergency departments (57, 58). It has also been suggested are trained more specifically for this purpose. Digital solutions that compared to usual care individualized care plans can lower could also be used to support liaison nurses. For instance, Maher distress scores and improve the mental domain of QoL among et al. developed a HSCT-specific health IT tool called BMT- HSCT-survivors 1–5 years post-transplant (59). Despite this, the Roadmap, that promotes survivor education and involvement use of tailored care planning is still relatively low in European during hospitalization (69). A BMT Roadmap 2 for the outpatient countries, with most studies conducted in the areas of chronic setting is currently being considered (70) and could also be used obstructive pulmonary disease (COPD) and diabetes patients to help survivors claim social benefits. Further attempts to use (60, 61). eHealth to improve care post-transplant highlight the enormous Frontiers in Public Health | www.frontiersin.org 10 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life potential of eHealth in promoting interdisciplinary collaboration health and long-term survival (85–88). Informal caregivers and patients’ satisfaction (71, 72). However, more research is can further provide valuable additional information on aspects needed to validate such interventions (68). of care survivors struggle with and how to overcome them Our data further suggest that survivors’ emotional and (86). More research is required that involves the views mental well-being, their satisfaction with and adherence to of survivors’ supportive others on how to improve their care could be improved by specific and continuing training care (21). for clinicians on patient-centered communication, for instance Finally, many survivors mentioned physical activity as an asset on more careful communication on how to deliver test to cope with the long-term effects of alloHSCT, increase their self- results. Survivors in our study reported that clinicians often confidence, optimism and self-effectiveness, and as a welcomed delivered test results accompanied by their first thoughts on distraction and timeout from daily routines and concerns. This is the interpretation and potential implications of these results. in line with previous studies suggesting that physical activity can This often caused survivors to assume the “worst case” scenario improve survivors’ outcomes, such as decreased hospitalization resulting in substantial anxiety and distress (73, 74). Participants and better physical health (89, 90). Wiskemann et al. found a also mentioned the importance of understanding the reasons positive correlation between non-relapse mortality and physical for their prescribed care post-transplant, including detailed activity (91). However, many survivors in or study struggled information on their medication and infection prevention with attending general fitness classes given a perceived risk measures. Survivors highlighted that this would help increase of infection. In light of these findings and given the current their feeling of being actively involved in their care and increase COVID-19 pandemic online exercise classes may help provide their adherence to their prescribed care. This is in line with survivors with an opportunity to stay physically active. However, several studies in other chronic settings which suggesting that further research is required that investigates how to design and survivors are more likely to be able to self-manage and adhere implement physical activity classes that are tailored to the special to their care instructions if they are empowered to do so by needs and circumstances of alloHSCT-survivors. being told why specific care instructions were given and what important role they play in their own recovery and survivorship care (75–77). Tailored communication trainings could also help LIMITATIONS clinicians enable and empower their patients and informal caregivers (78). This may be particularly important if patients Our results do not intend to be numerically representative. or their support persons as informal caregivers feel they have We employed theoretical sampling which is typically used in misunderstood certain aspects of their diagnosis, prognosis or qualitative work and aligns with the aims of this study to provide care but do not dare to mention this. Training in patient- fresh in-depth insights into survivors’ needs and experiences, centered communication could help assist patients and informal which is a recognized component of optimal care (92). Our data caregivers with expressing these unmet information needs, so also make suggestions for how to improve care in this area which that clinicians can address them. can guide clinical practice and resource allocation. However, due Participants in our study also indicated that communication to differences in healthcare services and systems our findings may could also be improved by providing publicly available not be generalizable to other settings. Our findings highlight that information on center characteristics such as the number partners may provide valuable information on survivors’ needs of transplants administered per year, the number of and experiences by complementing their narratives and raising different diseases types treated and how survivorship care topics not initially raised by survivors. Participating survivors is being delivered at each clinic. Similar efforts have been did not feel intimated by the presence of their partners but made in other areas of medicine suggesting that such appreciated sharing their thoughts and experiences with the information allows survivors to make informed decisions support of their partners. This is in line with previous studies regarding their care (79). This has been show to improve highlighting that interviewing individuals and their partners patient trust in their clinicians and may also increase together could generate richer data than interviewing them healthcare providers’ commitment to improve the quality separately due to the interaction between the interviewees leading of care (80, 81). to a more holistic presentation of the studied phenomena (93– A number of outcomes, such as adherence to the prescribed 95). However, it was not possible to include partners for all of our care, could also be increased by involving the triad of clinician, interviewees due to difficulties with recruitment, mostly due to a survivor and their informal caregiver (82). A number of studies lack of time. Theoretical sample ensured the representativeness suggested that involving survivors’ supportive network is a of the included participants in terms of age, gender, and key element of optimal patient-centered care (83, 84). Our socioeconomic status. Despite this, a significant percentage data confirmed this as partners played an important role in of survivors were married and attained year 10 or lower of helping survivors cope with the long-term effects of alloHSCT. education which could potentially limit the generalizability of Partners and other members of survivors’ supportive network the results. Also, we involved a limited number of centers and often provide one of the most important sources of information participants received alloHSCT at different centers and thus and advice for survivors, and can play an important role in received different transplant-related education, and different treatment decision making (22). They have been found to help support once discharged. This may affect the unmet needs found. improve a number of survivors’ outcomes, including mental Finally, there may have been recall bias since participants were Frontiers in Public Health | www.frontiersin.org 11 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life asked to comment on HSCT which was a number of years ago The patients/participants provided their written informed for some. consent to participate in this study. CONCLUSION AUTHOR CONTRIBUTIONS This qualitative study provides novel insights into alloHSCT- MP: conducted the interviews and wrote the manuscript. survivors’ experiences and needs post-transplant. It also includes JL: supervised the project. EH: supervised the project and partners’ views with the aim to add further information on commented on the manuscript. AB: added to the discussion of survivors’ needs and how care in this area could be improved. the data. DWe: recruited patients. ME: edited the manuscript. Our results suggest that the time post discharge is particularly DWo: initiated the project and supervised the project. challenging for most survivors who also often struggle with AH: initiated the project, performed the interviews, and neurocognitive decline and the need to reduce their workload or wrote the manuscript. HS: contributed to the discussion and quit work altogether during long-term survivorship. Survivors in manuscript. All authors contributed to the article and approved our study wished for further efforts to ensure patient-centered, the submitted version. multidisciplinary, holistic, continuous survivorship care that is tailored to their specific needs. Additional support with FUNDING navigating the healthcare and social service system as well as help with understanding and participating in their care could increase Initial funding for this study was provided by a grant of adherence to care, self-effectiveness and physical and mental the Jose Carreras Leukemia Foundation (DJCLS 01 FN/2018). well-being. This would involve improvement in communication This work was supported by the European Cooperation in and education along the whole transplant continuum, so Science & Technology under the COST Action CA17138 survivors can understand what they are dealing with and what (Integrated European Network on Chronic Graft vs. Host resources they may be entitled. This may be achieved by Disease: EUROGRAFT) (https://www.gvhd.eu). Infrastructure having specialized patient navigators and liaison nurses. Finally, support was provided by the University of Regensburg and the intervention studies are required to test the effectiveness of the University Hospital Regensburg. suggested strategies and, if found to be effective, investigate how these strategies could be best implemented into routine ACKNOWLEDGMENTS cancer care. We thank the survivors and partners who participated in this DATA AVAILABILITY STATEMENT study for their time and efforts. We also acknowledge the support provided by the clinic staff, particularly by the members of The raw data supporting the conclusions of this article will be the Brückenpflege. made available by the authors, without undue reservation. SUPPLEMENTARY MATERIAL ETHICS STATEMENT The Supplementary Material for this article can be found The studies involving human participants were reviewed and online at: https://www.frontiersin.org/articles/10.3389/fpubh. approved by ethics committee of the University of Regensburg. 2021.687675/full#supplementary-material REFERENCES 6. Mohty B, Mohty M. Long-term complications and side effects after allogeneic hematopoietic stem cell transplantation: an update. Blood Cancer J. (2011) 1. Appelbaum FR, Forman SJ, Negrin RS, Blume KG, editors. Thomas’ 1:e16. doi: 10.1038/bcj.2011.14 Hematopoietic Cell Transplantation. 4th ed. New York, NY: John Wiley & 7. Sahin U, Toprak SK, Atilla PA, Atilla E, Demirer T. An overview of infectious Sons (2011). complications after allogeneic hematopoietic stem cell transplantation. J Infect 2. Deutscher Ärzteverlag GmbH, Ärzteblatt RD. Richtlinie: Hämatopoetische Chemother. (2016) 22:505–14. doi: 10.1016/j.jiac.2016.05.006 Stammzelltransplantation. (2014). Available from: https://www.aerzteblatt. 8. Barata A, Wood WA, Choi SW, Jim HSL. Unmet needs for psychosocial care de/archiv/161332/Richtlinie-Haematopoetische-Stammzelltransplantation in hematologic malignancies and hematopoietic cell transplant. Curr Hematol (accessed December 9, 2019). Malig Rep. (2016) 11:280–7. doi: 10.1007/s11899-016-0328-z 3. Müller LP, Müller-Tidow C. The indications for allogeneic stem cell 9. Boyes AW, Girgis A, D’Este C, Zucca AC. Flourishing or floundering? transplantation in myeloid malignancies. Dtsch Arztebl Int. (2015) 112:262– Prevalence and correlates of anxiety and depression among a population- 70. doi: 10.3238/arztebl.2015.0262 based sample of adult cancer survivors 6months after diagnosis. J Affect 4. Passweg JR, Baldomero H, Chabannon C, Basak GW, Corbacioglu S, Duarte Disord. (2011) 135:184–92. doi: 10.1016/j.jad.2011.07.016 R, et al. The EBMT activity survey on hematopoietic-cell transplantation and 10. Lee SJ, Vogelsang G, Flowers MED. Chronic graft-versus-host disease. Biol cellular therapy 2018: CAR-T’s come into focus. Bone Marrow Transplant. Blood Marrow Transplant. (2003) 9:215–33. doi: 10.1053/bbmt.2003.50026 (2020) 55:1604–13. doi: 10.1038/s41409-020-0826-4 11. Ferrara JLM, Levine JE, Reddy P, Holler E. Graft-versus-host disease. Lancet. 5. Mosesso K. Adverse late and long-term treatment effects in adult allogeneic (2009) 373:1550–61. doi: 10.1016/S0140-6736(09)60237-3 hematopoietic stem cell transplant survivors. Am J Nurs. (2015) 115:22–34; 12. Passweg JR, Baldomero H. Overview: transplant data and increasing quiz 35. doi: 10.1097/01.NAJ.0000473311.79453.64 numbers of long-term survivors. In: Savani BN, editor. Blood and Marrow Frontiers in Public Health | www.frontiersin.org 12 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life Transplantation Long Term Management, Prevention and Complications. Vol. 31. Holloway I. Qualitative Research in Nursing and Healthcare. Chichester, West 354. Chichester, West Sussex: John Wiley & Sons (2014). p. 7–10. Sussex; Ames, IW: John Wiley et Sons Inc. (2017). 360 p. 13. Hashmi S, Carpenter P, Khera N, Tichelli A, Savani BN. Lost in transition: 32. Kusaka K, Inoguchi H, Nakahara R, Kurosawa S, Fukuda T, Satomura K, the essential need for long-term follow-up clinic for blood and marrow et al. Stress and coping strategies among allogeneic haematopoietic stem transplantation survivors. Biol Blood Marrow Transplant. (2015) 21:225– cell transplantation survivors: a qualitative study. Eur J Cancer Care. (2020) 32. doi: 10.1016/j.bbmt.2014.06.035 29:e13307. doi: 10.1111/ecc.13307 14. Copelan EA. Hematopoietic stem-cell transplantation. N Engl J Med. (2006) 33. Biagioli V, Piredda M, Alvaro R, de Marinis MG. The experiences of protective 354:1813–26. doi: 10.1056/NEJMra052638 isolation in patients undergoing bone marrow or haematopoietic stem cell 15. Raphael D, Frey R, Gott M. The nature and timing of distress among transplantation: systematic review and metasynthesis. Eur J Cancer Care. post-treatment haematological cancer survivors. Eur J Cancer Care. (2019) (2017) 26. doi: 10.1111/ecc.12461 28:e12951. doi: 10.1111/ecc.12951 34. Amonoo HL, Brown LA, Scheu CF, Harnedy LE, Pirl WF, El-Jawahri 16. Hall A, Campbell HS, Sanson-Fisher R, Lynagh M, D’Este C, Burkhalter A, et al. Beyond depression, anxiety and post-traumatic stress disorder R, et al. Unmet needs of Australian and Canadian haematological cancer symptoms: qualitative study of negative emotional experiences in survivors: a cross-sectional international comparative study. Psychooncology. hematopoietic stem cell transplant patients. Eur J Cancer Care. (2020) (2013) 22:2032–8. doi: 10.1002/pon.3247 29:e13263. doi: 10.1111/ecc.13263 17. Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the 35. Jepsen LØ, Friis LS, Hoybye MT, Marcher CW, Hansen DG. Rehabilitation unmet supportive care needs of people with cancer? A systematic review. during intensive treatment of acute leukaemia including allogenic stem cell Support Care Cancer. (2009) 17:1117–28. doi: 10.1007/s00520-009-0615-5 transplantation: a qualitative study of patient experiences. BMJ Open. (2019) 18. Laidsaar-Powell R, Konings S, Rankin N, Koczwara B, Kemp E, Mazariego 9:e029470. doi: 10.1136/bmjopen-2019-029470 C, et al. A meta-review of qualitative research on adult cancer survivors: 36. Leppla L, Mielke J, Kunze M, Mauthner O, Teynor A, Valenta S, et al. current strengths and evidence gaps. J Cancer Surviv. (2019) 13:852– Clinicians and patients perspectives on follow-up care and eHealth support 89. doi: 10.1007/s11764-019-00803-8 after allogeneic hematopoietic stem cell transplantation: a mixed-methods 19. Hwang JP, Roundtree AK, Giralt SA, Suarez-Almazor M. Late contextual analysis as part of the SMILe study. Eur J Oncol Nurs. effects and healthcare needs of survivors of allogeneic stem cell (2020) 45:101723. doi: 10.1016/j.ejon.2020.101723 transplantation: a qualitative study. BMJ Support Palliat Care. (2012) 37. Morrison CF, Pai ALH, Martsolf D. Facilitators and barriers to self- 2:344–50. doi: 10.1136/bmjspcare-2012-000277 management for adolescents and young adults following a hematopoietic 20. Bishop MM, Beaumont JL, Hahn EA, Cella D, Andrykowski MA, Brady MJ, stem cell transplant formula: see text. J Pediatr Oncol Nurs. (2018) 35:36– et al. Late effects of cancer and hematopoietic stem-cell transplantation on 42. doi: 10.1177/1043454217723864 spouses or partners compared with survivors and survivor-matched controls. 38. Martin PJ, Counts GW, Appelbaum FR, Lee SJ, Sanders JE, Deeg J Clin Oncol. (2007) 25:1403–11. doi: 10.1200/JCO.2006.07.5705 HJ, et al. Life expectancy in patients surviving more than 5 years 21. Langer SL, Porter LS, Romano JM, Todd MW, Lee SJ. A couple- after hematopoietic cell transplantation. J Clin Oncol. (2010) 28:1011– based communication intervention for hematopoietic cell transplantation 6. doi: 10.1200/JCO.2009.25.6693 survivors and their caregiving partners: feasibility, acceptability, and change 39. Duell T, van Lint MT, Ljungman P, Tichelli A, Socié G, Apperley in process measures. Biol Blood Marrow Transplant. (2018) 24:1888– JF, et al. Health and functional status of long-term survivors 95. doi: 10.1016/j.bbmt.2018.05.013 of bone marrow transplantation. EBMT Working Party on Late 22. Siminoff LA. Incorporating patient and family preferences into Effects and EULEP Study Group on Late Effects. European Group evidence-based medicine. BMC Med Inform Decis Mak. (2013) for Blood and Marrow Transplantation. Ann Intern Med. (1997) 13(Suppl.):3S6. doi: 10.1186/1472-6947-13-S3-S6 126:184–92. doi: 10.7326/0003-4819-126-3-199702010-00002 23. Stiggelbout AM, Jansen SJT, Otten W, Baas-Thijssen MCM, van Slooten 40. Chen Y-Y, Wang C-C, Wu W-T, Lai C-H, Ho C-L, Hsu Y-Y, et al. Trajectories H, van de Velde CJH. How important is the opinion of significant of returning to work and its impact on survival in survivors with oral cancer: a others to cancer patients’ adjuvant chemotherapy decision-making? 5-year follow-up study. Cancer. (2020) 126:1225–34. doi: 10.1002/cncr.32643 Support Care Cancer. (2007) 15:319–25. doi: 10.1007/s00520-006- 41. Yu Y, Carey M, Pollett W, Green J, Dicks E, Parfrey P, et al. The long-term 0149-z survival characteristics of a cohort of colorectal cancer patients and baseline 24. Herrmann A, Sanson-Fisher R, Hall A, Wall L, Zdenkowski N, Waller A. variables associated with survival outcomes with or without time-varying Support persons’ preferences for the type of consultation and the format of effects. BMC Med. (2019) 17:150. doi: 10.1186/s12916-019-1379-5 information provided when making a cancer treatment decision. BMC Res 42. Glaser BG, Strauss AL. Grounded Theory: STRATEGIEN Qualitativer Notes. (2018) 11:456. doi: 10.1186/s13104-018-3552-x Forschung. 3rd ed. Bern: Verlag Hans Huber (2010). 278 p. 25. Pulvirenti M, McMillan J, Lawn S. Empowerment, patient 43. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. centred care and self-management. Health Expect. (2014) Purposeful sampling for qualitative data collection and analysis in mixed 17:303–10. doi: 10.1111/j.1369-7625.2011.00757.x method implementation research. Adm Policy Ment Health. (2015) 42:533– 26. Jaensch D, Baker N, Gordon S. Contemporaneous patient and health 44. doi: 10.1007/s10488-013-0528-y professional views of patient-centred care: a systematic review. Int J Qual 44. Fitch MI. Supportive care framework. CONJ. (2008) 18:6– Health Care. (2019) 31:G165–73. doi: 10.1093/intqhc/mzz118 14. doi: 10.5737/1181912x181614 27. Langer S, Lehane C, Yi J. Patient and caregiver adjustment to hematopoietic 45. Woods P, Gapp R, King MA. Generating or developing grounded theory: stem cell transplantation: a systematic review of dyad-based studies. Curr methods to understand health and illness. Int J Clin Pharm. (2016) 38:663– Hematol Malig Rep. (2017) 12:324–34. doi: 10.1007/s11899-017-0391-0 70. doi: 10.1007/s11096-016-0260-2 28. Poloméni A, Lapusan S, Bompoint C, Rubio MT, Mohty M. The impact 46. Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the of allogeneic-hematopoietic stem cell transplantation on patients’ and close framework method for the analysis of qualitative data in multi- relatives’ quality of life and relationships. Eur J Oncol Nurs. (2016) 21:248– disciplinary health research. BMC Med Res Methodol. (2013) 56. doi: 10.1016/j.ejon.2015.10.011 13:13117. doi: 10.1186/1471-2288-13-117 29. Brice L, Gilroy N, Dyer G, Kabir M, Greenwood M, Larsen S, et al. 47. Flick U, Kardorff E von, Steinke I, editors. Qualitative Forschung: Ein Haematopoietic stem cell transplantation survivorship and quality of life: Handbuch. 12th ed. In: Rororo Rowohlts Enzyklopädie. vol. 55628. Reinbek is it a small world after all? Support Care Cancer. (2017) 25:421– bei Hamburg: rowohlts enzyklopädie im Rowohlt Taschenbuch Verlag (2017). 7. doi: 10.1007/s00520-016-3418-5 767 p. 30. Lindman A, Krintel Petersen A, Olesen G, Handberg C. Patients’ experiences 48. Fuji S, Kapp M, Einsele H. Challenges to preventing infectious complications, and perspectives of challenges and needs related to nonmyeloablative stem decreasing re-hospitalizations, and reducing cost burden in long-term cell transplantation: involving patients in developing a targeted rehabilitation survivors after allogeneic hematopoietic stem cell transplantation. Semin programme. J Clin Nurs. (2019) 28:1260–72. doi: 10.1111/jocn.14739 Hematol. (2012) 49:10–4. doi: 10.1053/j.seminhematol.2011.10.009 Frontiers in Public Health | www.frontiersin.org 13 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life 49. Scherwath A, Schirmer L, Kruse M, Ernst G, Eder M, Dinkel A, et al. Cognitive survivor’s receipt of follow-up care? J Cancer Surviv. (2015) functioning in allogeneic hematopoietic stem cell transplantation recipients 9:692–8. doi: 10.1007/s11764-015-0444-0 and its medical correlates: a prospective multicenter study. Psychooncology. 68. Berezowska A, Passchier E, Bleiker E. Evaluating a professional patient (2013) 22:1509–16. doi: 10.1002/pon.3159 navigation intervention in a supportive care setting. Support Care Cancer. 50. Jim HSL, Quinn GP, Gwede CK, Cases MG, Barata A, Cessna J, et al. (2019) 27:3281–90. doi: 10.1007/s00520-018-4622-2 Patient education in allogeneic hematopoietic cell transplant: what patients 69. Maher M, Kaziunas E, Ackerman M, Derry H, Forringer R, Miller K, wish they had known about quality of life. Bone Marrow Transplant. (2014) et al. User-Centered design groups to engage patients and caregivers with 49:299–303. doi: 10.1038/bmt.2013.158 a personalized health information technology tool. Biol Blood Marrow 51. Duarte-Climents G, Sánchez-Gómez MB, Rodríguez-Gómez JÁ, Rodríguez- Transplant. (2016) 22:349–58. doi: 10.1016/j.bbmt.2015.08.032 Álvarez C, Sierra-López A, Aguirre-Jaime A, et al. Impact of the case 70. Chaar D, Shin JY, Mazzoli A, Vue R, Kedroske J, Chappell G, et al. A mobile management model through community liaison nurses. Int J Environ Res health app (Roadmap 2.0) for patients undergoing hematopoietic stem cell Public Health. (2019) 16. doi: 10.3390/ijerph16111894 transplant: qualitative study on family caregivers’ perspectives and design 52. Aued GK, Bernardino E, Lapierre J, Dallaire C. Atividades das enfermeiras considerations. JMIR Mhealth Uhealth. (2019) 7:e15775. doi: 10.2196/15775 de ligação na alta hospitalar: uma estratégia para a continuidade do 71. Racioppi A, Dalton T, Ramalingam S, Romero K, Ren Y, Bohannon L, cuidado [Liaison nurse activities at hospital discharge: a strategy et al. Assessing the feasibility of a novel mhealth app in hematopoietic for continuity of care]. Rev Lat Am Enfermagem. (2019) 27:e3162. stem cell transplant patients. Transplant Cell Therapy. (2021) por. doi: 10.1590/1518-8345.3069.3162 27:181.e1. doi: 10.1016/j.jtct.2020.10.017 53. Rice RD, Bailey G. Management issues in hematopoietic 72. Leppla L, Hobelsberger S, Rockstein D, Werlitz V, Pschenitza S, Heidegger stem cell transplantation. Semin Oncol Nurs. (2009) 25:151– P, et al. Implementation science meets software development to create 8. doi: 10.1016/j.soncn.2009.03.009 ehealth components for an integrated care model for allogeneic stem cell 54. Muhsen IN, Bar M, Savani BN, Estey EH, Hashmi SK. Follow-up issues transplantation facilitated by eHealth: The SMILe Study as an example. J Nurs in survivors of hematologic malignancies - Current stance and future Scholarsh. (2021) 53:35–45. doi: 10.1111/jnu.12621 perspectives. Blood Rev. (2020) 44:100674. doi: 10.1016/j.blre.2020.100674 73. Visser L. How oncologists’ Communication Impacts Patients’ Information Recall 55. McConnell H, White R, Maher J. Categorising cancers to enable tailored care and Emotional Stress. A Video-Vignettes Approach. Ridderkerk: Ridderprint planning through a secondary analysis of cancer registration data in the UK. (2017). BMJ Open. (2017) 7:e016797. doi: 10.1136/bmjopen-2017-016797 74. Dang BN, Westbrook RA, Njue SM, Giordano TP. Building trust and rapport 56. Wagner EH, Bennett SM, Austin BT, Greene SM, Schaefer JK, Vonkorff early in the new doctor-patient relationship: a longitudinal qualitative study. M. Finding common ground: patient-centeredness and evidence- BMC Med Educ. (2017) 17:32. doi: 10.1186/s12909-017-0868-5 based chronic illness care. J Altern Complement Med. (2005) 11:S7–15. 75. Charles C, Gafni A, Whelan T. Decision-making in the physician–patient doi: 10.1089/acm.2005.11.s-7 encounter: revisiting the shared treatment decision-making model. Soc Sci 57. John JR, Jani H, Peters K, Agho K, Tannous WK. The effectiveness of patient- Med. (1999) 49:651–61. doi: 10.1016/S0277-9536(99)00145-8 centred medical home-based models of care versus standard primary care 76. Montori VM, Gafni A, Charles C. A shared treatment decision- in chronic disease management: a systematic review and meta-analysis of making approach between patients with chronic conditions randomised and non-randomised controlled trials. Int J Environ Res Public and their clinicians: the case of diabetes. Health Expect. (2006) Health. (2020) 17. doi: 10.3390/ijerph17186886 9:25–36. doi: 10.1111/j.1369-7625.2006.00359.x 58. Fertel BS, Podolsky SR, Mark J, Muir MR, Ladd ME, Smalley CM. Impact of 77. Kambhampati S, Ashvetiya T, Stone NJ, Blumenthal RS, Martin SS. Shared an individual plan of care for frequent and high utilizers in a large healthcare decision-making and patient empowerment in preventive cardiology. Curr system. Am J Emerg Med. (2019) 37:2039–42. doi: 10.1016/j.ajem.2019.02.032 Cardiol Rep. (2016) 18:49. doi: 10.1007/s11886-016-0729-6 59. Majhail NS, Murphy E, Laud P, Preussler JM, Denzen EM, Abetti B, 78. Back AL, Fromme EK, Meier DE. Training clinicians with communication et al. Randomized controlled trial of individualized treatment summary skills needed to match medical treatments to patient values. J Am Geriatr Soc. and survivorship care plans for hematopoietic cell transplantation survivors. (2019) 67:S435–41. doi: 10.1111/jgs.15709 Haematologica. (2019) 104:1084–92. doi: 10.3324/haematol.2018.203919 79. O’Hara LM, Caturegli I, O’Hara NN, O’Toole RV, Dalury DF, Harris AD, et al. 60. Jansen DL, Heijmans M, Rijken M. Individual care plans for What publicly available quality metrics do hip and knee arthroplasty patients chronically ill patients within primary care in the Netherlands: care about most when selecting a hospital in Maryland: a discrete choice dissemination and associations with patient characteristics and experiment. BMJ Open. (2019) 9:e028202. doi: 10.1136/bmjopen-2018-028202 patient-perceived quality of care. Scand J Prim Health Care. (2015) 80. Hibbard JH, Stockard J, Tusler M. Does publicizing hospital 33:100–6. doi: 10.3109/02813432.2015.1030167 performance stimulate quality improvement efforts? Health Aff. (2003) 61. Rijken M, van der Heide I, Heijmans M. Individual care plans in 22:84–94. doi: 10.1377/hlthaff.22.2.84 chronic illness care: aims, use and outcomes. Int J Integr Care. (2016) 81. Hall MA, Dugan E, Zheng B, Mishra AK. Trust in physicians and medical 16:209. doi: 10.5334/ijic.2757 institutions: what is it, can it be measured, and does it matter? Milbank Q. 62. Günther B. Achtsame Kommunikation in der Arztpraxis: Technik, Kultur, (2001) 79:613–39. doi: 10.1111/1468-0009.00223 Führung und Selbstmanagement. Berlin: MWV Medizinisch Wissenschaftliche 82. Charles C, Gafni A, Whelan T. Shared decision-making in the medical Verlagsges. mbH & Co. KG. (2015). 94 p. encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 63. Laitinen H, Kaunonen M, Åstedt-Kurki P. The impact of using electronic (1982). (1997) 44:681–92. doi: 10.1016/S0277-9536(96)-3 patient records on practices of reading and writing. Health Informatics J. 83. Moxley DP. The Practice of Case Management. 10th ed. Newbury Park: Sage (2014) 20:235–49. doi: 10.1177/1460458213492445 Publ (1996). 157 p. 64. Press MJ, Gerber LM, Peng TR, Pesko MF, Feldman PH, Ouchida K, et al. 84. Gerteis M. Through the Patient’s Eyes: Understanding and Promoting Patient- Postdischarge communication between home health nurses and physicians: Centered Care. San Francisco, CA: Jossey-Bass (1993). Xxvii p. measurement, quality, and outcomes. J Am Geriatr Soc. (2015) 63:1299– 85. Ah DV, Spath M, Nielsen A, Fife B. The caregiver’s role across the 305. doi: 10.1111/jgs.13491 bone marrow transplantation trajectory. Cancer Nurs. (2016) 39:E12– 65. Williams C, Hamadi H, Cummings C, Zakari NMA. Information processing 9. doi: 10.1097/NCC.0000000000000242 in electronic medical records: a survey validation. J Eval Clin Pract. (2019) 86. Foster LW, McLellan L, Rybicki L, Dabney J, Copelan E, Bolwell B. Validating 25:97–103. doi: 10.1111/jep.13017 the positive impact of in-hospital lay care-partner support on patient survival 66. Bush ML, Kaufman MR, Shackleford T. Adherence in the cancer care setting: in allogeneic BMT: a prospective study. Bone Marrow Transplant. (2013) a systematic review of patient navigation to traverse barriers. J Cancer Educ. 48:671–7. doi: 10.1038/bmt.2012.208 (2018) 33:1222–9. doi: 10.1007/s13187-017-1235-2 87. Foster LW, McLellan LJ, Rybicki LA, Sassano DA, Hsu A, Bolwell BJ. Survival 67. Jabson JM. Treatment summaries, follow-up care instructions, and of patients who have undergone allogeneic bone marrow transplantation. J patient navigation: could they be combined to improve cancer Psychosoc Oncol. (2005) 22:1–20. doi: 10.1300/J077v22n02_01 Frontiers in Public Health | www.frontiersin.org 14 July 2021 | Volume 9 | Article 687675 Parisek et al. GVHD Impacts Life 88. Frey P, Stinson T, Siston A, Knight SJ, Ferdman E, Traynor A, 95. Taylor B, de Vocht H. Interviewing separately or as couples? et al. Lack of caregivers limits use of outpatient hematopoietic Considerations of authenticity of method. Qual Health Res. (2011) stem cell transplant program. Bone Marrow Transplant. (2002) 21:1576–87. doi: 10.1177/1049732311415288 30:741–8. doi: 10.1038/sj.bmt.1703676 89. Dimeo F, Fetscher S, Lange W, Mertelsmann R, Keul J. Conflict of Interest: HS has received financial compensation for advisory Effects of aerobic exercise on the physical performance and boards (Incyte, Janssen, and Novartis), speaker’s fees [Novartis, Incyte, Jazz incidence of treatment-related complications after high-dose Pharmaceuticals, the Belgian Hematological Society (BHS) and Takeda], travel chemotherapy. Blood. (1997) 90:3390–4. doi: 10.1182/blood.V90. grants (AbbVie, Celgene, CIBMTR, EBMT, Gilead, and Incyte), and research 9.3390 funding (Novartis and the BHS). She also frequently served as a volunteer for the 90. Abo S, Ritchie D, Denehy L, Panek-Hudson Y, Irving L, Granger CL. A BHS, the CIBMTR, EBMT, and EUPATI. DWo received honoraria from Novartis, hospital and home-based exercise program to address functional decline in Behring, Mallinckrodt, MACO, and Incyte. people following allogeneic stem cell transplantation. Support Care Cancer. (2018) 26:1727–36. doi: 10.1007/s00520-017-4016-x The remaining authors declare that the research was conducted in the absence of 91. Wiskemann J, Kleindienst N, Kuehl R, Dreger P, Schwerdtfeger R, Bohus any commercial or financial relationships that could be construed as a potential M. Effects of physical exercise on survival after allogeneic stem cell conflict of interest. transplantation. Int J Cancer. (2015) 137:2749–56. doi: 10.1002/ijc.29 633 Copyright © 2021 Parisek, Loss, Holler, Barata, Weber, Edinger, Wolff, Schoemans 92. Stewart M. Towards a global definition of patient centred care. BMJ. (2001) and Herrmann. This is an open-access article distributed under the terms of 322:444–5. doi: 10.1136/bmj.322.7284.444 the Creative Commons Attribution License (CC BY). The use, distribution or 93. Bjørnholt M, Farstad GR. ‘Am I rambling?’ on the advantages of interviewing reproduction in other forums is permitted, provided the original author(s) and the couples together. Qual Res. (2014) 14:3–19. doi: 10.1177/1468794112459671 copyright owner(s) are credited and that the original publication in this journal 94. Allan G. A note on interviewing spouses together. J Marriage Fam. (1980) is cited, in accordance with accepted academic practice. No use, distribution or 42:205. doi: 10.2307/351948 reproduction is permitted which does not comply with these terms. Frontiers in Public Health | www.frontiersin.org 15 July 2021 | Volume 9 | Article 687675