“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

Abstract

Background: Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only curative treatment modality for many patients affected by hematologic malignancies. However, it can cause debilitating long-term effects. Understanding the impact of alloHSCT on all aspects of the patients' life is required for optimal survivorship management.Aim: To explore in-depth HSCT-survivors' experiences and needs post-transplant. Partners were included to provide further information on survivors' needs and how care could be improved in this area.Methods: We conducted semi-structured face-to-face and phone interviews with alloHSCT-survivors and their partners referred to a survivorship clinic in Germany. Theoretical sampling was used to recruit participants. Data were analyzed using framework analysis.Results: Thirty-two survivors (consent rate: 100%, response rate: 100%) and eighteen partners (consent rate: 84%, response rate: 72%) participated. Survivors were aged between 25 and 68 years (Median: 48, IQR: 25.3) and partners were aged between 26 and 64 years (Median: 54, IQR: 16, SD: 12.8). The themes emerging from the data involved survivors' needs included (i) the diversity of long-term treatment side-effects; and (ii) time post discharge as a dynamic process with individual peaks of burden. Survivors and their partners also suggested strategies for mitigating these unmet needs, i.e., (iii) transparent communication and patient empowerment; and (iv) improvement 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.

Allogeneic Stem Cell Transplantation in Multiple Myeloma

“…With the help of our revised Myeloma Comorbidity Index (R-MCI) we could show that quality of life may not necessarily be impaired after allo-SCT, probably because a reduction of illness-induced limitations may outweigh therapy-associated impairment [ 17 , 46 ]. However, long-term side effects of allo-SCT widely vary between individual patients and have to be seen as a dynamic process with changing burden of symptoms [ 47 ]. Thus, depending on the timepoint of symptom assessment, the rate of chronic GvHD of any grade ranges from 22% to 67% in different trials [ 17 , 24 , 37 , 44 , 48 , 49 ].…”

Exercise in allogeneic bone marrow transplantation: a qualitative representation of the patient perspective

“…Furthermore, participants in our study identified that improving knowledge of the importance of exercise on recovery could be used to incentivise exercise; thus, education should be incorporated to maximise psychological capability. Physical and social opportunity to exercise can be maximised through environmental change [26]; our study suggests flexible structuring of exercise around medical appointments and, on par with Parisek and colleagues (2021), ensuring consistent provision of exercise support from pre-to post-transplant [18]. Regarding motivation to exercise in BMT, our study identified that support from staff, exercise tools and outcome measurement of physical change provided automatic incentive, whilst belief that exercise would provide a sense of control or benefit recovery provided reflective motivation.…”

“…There is a paucity of research examining the patient perspective regarding physical activity or exercise in BMT. Qualitative research in BMT has predominantly been in multiple myeloma and/or autologous BMT [14][15][16][17] and that in allogeneic BMT has focused on symptoms rather than participation in an exercise program [18,19]. In allogeneic BMT, patients perceive physical incapacity and/or reduced self-efficacy as key issues post-transplant hence increased access to specialised exercise support is required [18,19].…”

Mediating effect of ill perception on the relationship between social constraints and fear of cancer recurrence among adolescent and young adult survivors who underwent hematopoietic stem cell transplantation

“…Numerous researchers have demonstrated the effects of HSCT on patients' interpersonal relationships and social networks. 44 , 45 Firstly, their social circle shrinks, and some survivors face various challenges like discrimination, career derailment, job insecurity, and mental limitations as a result of their illness. These challenges make them to withdraw from social circles.…”