Burden and Needs of Patients with Severe GvHD from the Supportive and Palliative Care Perspective—A Literature Review

Abstract

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.

Developing a supportive and palliative care intervention for patients with allogeneic stem cell transplantation: protocol of a multicentre mixed-methods study (allo-PaS)

“…The study data, together with two literature reviews, will constitute a reliable basis to later conceptualise, pilot and finalise a supportive-palliative care intervention (table 1). 15 21 In this article, we focus on the description of the mixed-methods study as a preliminary key element for the development of the intervention.…”

“…Fatigue might persist even 5 years after transplantation 20. Acute and chronic GvHD, especially in their more severe forms, are associated with a higher burden of physical symptoms and reduced physical functions 4 19 21. Psychological distress is also highly prevalent 2–4 15.…”

“…Post-traumatic stress disorder is also a major concern after allo-SCT 4 23–26. Further, studies indicate that mental health is impaired by acute and chronic GvHD 10 21 27. Quality of life is also reduced compared with pre-transplantation scores, mainly until 1 year post-allo-SCT 4 10 27.…”

“…Quality of life is also reduced compared with pre-transplantation scores, mainly until 1 year post-allo-SCT 4 10 27. In allo-SCT survivors, chronic GvHD has a major impact on quality of life 5 21…”

Understanding the Needs and Lived Experiences of Patients With Graft-Versus-Host Disease: Real-World European Public Social Media Listening Study

“…Impaired quality of life (QoL) is often reported in patients with GVHD, particularly in those with cGVHD who experience physical challenges. In addition to reduced QoL, cGVHD has been associated with low functional status and high symptom burden [11][12][13][14]. A patient-reported outcomes study with patients who have ongoing cGVHD highlighted that 26.7%-39.4% of patients were unable to work due to health-related issues, compared with 12.1% whose cGVHD had resolved and 15.4% who did not have cGVHD [13].…”