Direkt zum Inhalt

Herrmann, Anne ; Parisek, Mira ; Loss, Julika ; Holler, Ernst ; Barata, Anna ; Weber, Daniela ; Edinger, Matthias ; Wolff, Daniel ; Schoemans, Helene

“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

Herrmann, Anne , Parisek, Mira, Loss, Julika, Holler, Ernst, Barata, Anna, Weber, Daniela, Edinger, Matthias, Wolff, Daniel und Schoemans, Helene (2021) “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. Frontiers in Public Health 2021 (9), S. 687675. (Eingereicht)

Veröffentlichungsdatum dieses Volltextes: 09 Jul 2021 13:37
Artikel
DOI zum Zitieren dieses Dokuments: 10.5283/epub.45617


Zusammenfassung

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 ...

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.



Beteiligte Einrichtungen


Details

DokumentenartArtikel
Titel eines Journals oder einer ZeitschriftFrontiers in Public Health
Verlag:Frontiers
Ort der Veröffentlichung:LAUSANNE
Band:2021
Nummer des Zeitschriftenheftes oder des Kapitels:9
Seitenbereich:S. 687675
Datum1 Juli 2021
InstitutionenMedizin > Lehrstuhl für Innere Medizin III (Hämatologie und Internistische Onkologie)
Medizin > Institut für Epidemiologie und Präventivmedizin
Identifikationsnummer
WertTyp
10.3389/fpubh.2021.687675DOI
Stichwörter / KeywordsBONE-MARROW-TRANSPLANTATION; PATIENT-CENTERED CARE; LONG-TERM SURVIVORS; CANCER SURVIVORS; DECISION-MAKING; INFECTIOUS COMPLICATIONS; UNMET NEEDS; OF-LIFE; HEALTH; CAREGIVERS; allogeneic hematopoietic stem cells transplantation; survivorship; patients view; framework analysis; qualitative research; GvHD
Dewey-Dezimal-Klassifikation600 Technik, Medizin, angewandte Wissenschaften > 610 Medizin
StatusEingereicht
BegutachtetJa, diese Version wurde begutachtet
An der Universität Regensburg entstandenJa
URN der UB Regensburgurn:nbn:de:bvb:355-epub-456178
Dokumenten-ID45617

Bibliographische Daten exportieren

Nur für Besitzer und Autoren: Kontrollseite des Eintrags

nach oben