Universität zu Köln

Wenzel, Freya ORCID: 0009-0008-6038-5287 (2026). Bedürfnisse, Belastungen und Ressourcen bei Patient*innen mit schwerer, persistierender GvHD nach allogener Stammzelltransplantation. PhD thesis, Universität zu Köln.

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Abstract

Burden, resources, and needs of patients with severe graft-versus-host disease – A qualitative study: Objectives: Severe forms of acute and chronic graft-versus-host disease (GvHD) are lifethreatening complications after adjusted to allogeneic hematopoietic bone marrow or peripheral blood stem cell transplantation (allo-HSCT) and are a major cause of non-relapse mortality. Little is known about the burden, needs, and resources of this specific patient group. This qualitative interview study aimed to explore the experiences of patients with severe forms of GvHD and their perception of palliative care (PC). Methods: Semi-structured interviews were conducted among 13 participants at a tertiary university hospital and were evaluated by qualitative content analysis. Results: The participants described a high psychological and physical symptomatic burden resulting in severely impaired physical function up to loss of independence, which all substantially limited their quality of life (QoL). Frequent long-term hospitalizations highly impacted their social life including the ability to work. A desire to die was frequently experienced, particularly when participants suffered from peaks of burden and uncertainty about the future. Dying was either feared or perceived as relief. Not all participants received PC and the term was sometimes associated with fear or remained unclear to them. Significance of results: Patients with severe forms of GvHD described a multifactorial, high overall burden, and permanently impaired QoL, which needs special support. Next to depressive symptoms, the frequently reported desire to die has not yet been thoroughly studied and requires further research. The infrequent use of PC in this context implicates a need for structural improvement and education in the German healthcare system. Burden and Needs of Patients with Severe GvHD from the Supportive and Palliative Care Perspective—A Literature Review: Graft-versus-host disease (GvHD) is a frequent, and often life-threatening, complication after an allogeneic, hematopoietic stem cell transplantation (allo-SCT). It can appear in an acute or a chronic form and presents different grades of severity. Particularly, the severe forms of GvHD are often responsible for a change of the curative intent for allo-SCT into a palliative goal of care. For this non-systematic review, we conducted a focused literature search in the MEDLINE database via PubMed to examine whether patients with severe forms of GvHD might have special needs and burdens from a supportive and palliative care perspective. To draw a comprehensive picture of this patient group, we included findings on quality of life (QoL) and physical symptoms and function as well as psychological and spiritual well-being. In most domains, patients with severe forms of GvHD showed greater impairment and a higher symptom burden compared to patients with milder forms of GvHD. However, we could not identify any studies that specifically investigated patients with severe forms of GvHD. Further research in this field is necessary to guarantee the highest standard of care for this very special patient group.

Item Type:	Thesis (PhD thesis)
Translated title:	Title Language Needs, burden and resources of patients with severe, persistent GvHD after allogeneic stem cell transplantation English
Creators:	Creators Email ORCID ORCID Put Code Wenzel, Freya UNSPECIFIED https://orcid.org/0009-0008-6038-5287 UNSPECIFIED
URN:	urn:nbn:de:hbz:38-812516
Date:	2026
Language:	English
Faculty:	Faculty of Medicine
Divisions:	Faculty of Medicine > Palliativmedizin
Subjects:	Medical sciences Medicine
Uncontrolled Keywords:	Keywords Language graft-versus-host disease; palliative care; supportive care; hematopoietic stem cell transplantation; quality of life; physical function English
Date of oral exam:	1 June 2026
Referee:	Name Academic Title Simon, Steffen Professor Dr. med. Scheid, Christoph Professor Dr. med. Dr. h. c.
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/81251