"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
Parisek, Mira (University of Regensburg)
Loss, Julika (Robert Koch Institute)
Holler, Ernst (University Hospital Regensburg)
Barata, Anna (Institut Germans Trias i Pujol. Institut de Recerca contra la Leucèmia Josep Carreras)
Weber, Daniela (University Hospital Regensburg)
Edinger, Matthias (University Hospital Regensburg)
Wolff, Daniel (University Hospital Regensburg)
Schoemans, Helene (Katholieke Universiteit Leuven)
Herrmann, Anne (University of Newcastle)

Date:	2021
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.
Note:	Initial funding for this study was provided by a grant of the Jose Carreras Leukemia Foundation (DJCLS 01 FN/2018). This work was supported by the European Cooperation in Science & Technology under the COST Action CA17138 (Integrated European Network on Chronic Graft vs. Host Disease: EUROGRAFT) (https://www.gvhd.eu). Infrastructure support was provided by the University of Regensburg and the University Hospital Regensburg.
Note:	We thank the survivors and partners who participated in this study for their time and efforts. We also acknowledge the support provided by the clinic staff, particularly by the members of the Brückenpflege. Funding. Initial funding for this study was provided by a grant of the Jose Carreras Leukemia Foundation (DJCLS 01 FN/2018). This work was supported by the European Cooperation in Science & Technology under the COST Action CA17138 (Integrated European Network on Chronic Graft vs. Host Disease: EUROGRAFT) (https://www.gvhd.eu). Infrastructure support was provided by the University of Regensburg and the University Hospital Regensburg.
Rights:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Language:	Anglès
Document:	Article ; recerca ; Versió publicada
Published in:	Frontiers in Public Health, Vol. 9 (january 2021) , p. 687675, ISSN 2296-2565

DOI: 10.3389/fpubh.2021.687675
PMID: 34277549

15 p, 345.1 KB

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Research literature > UAB research groups literature > Research Centres and Groups (research output) > Health sciences and biosciences > Institut d'Investigació en Ciencies de la Salut Germans Trias i Pujol (IGTP) > Josep Carreras Leukaemia Research Institute
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