Objectives: Severe forms of acute and chronic graft-versus-host disease (GvHD) are life-threatening 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.