“Is this the GVHD?” A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service

Abstract

Background Graft-versus-host disease (GVHD) is a significant cause of morbidity and mortality following allogeneic stem cell transplantation. These patients face unique challenges due to the complexity of GVHD which can affect multiple organ systems, and the toxicity of treatments. Despite the known impact on quality of life (QOL), qualitative data within the bone marrow transplantation (BMT) literature is rare, and there has been no qualitative work exploring patient experience of specialist healthcare provision for GVHD in the United Kingdom. Methods We conducted a primary explorative qualitative study of the experience of QOL issues and multidisciplinary care in patients with chronic GVHD following allogeneic stem cell transplantation. Eight patients were identified using convenience sampling from specialist BMT outpatient clinics. Following consent, patients were interviewed individually via telephone. Transcripts of interviews were analyzed using an inductive thematic approach. Results Mean participant age was 61-years-old (range 45–68), with a mean time post-transplant of 3 years at time of interview (range 3 months–15 years). Five key QOL themes were identified: (1) ‘Restricted as to what I can do’; (2) Troubling symptoms—‘you can sort of get GVHD anywhere’; (3) Confusion/uncertainty over GVHD symptoms—‘Is this the GVHD?’; (4) Unpredictable course and uncertainty about the future; and (5) Adapting to the sick role. In addition, four themes related to experience of service provision were identified: (1) personal care and close relationship with BMT nurses; (2) efficiency versus long waits—‘On the case straight away’; (3) information provision—‘went into it with a bit of a rosy view’; and (4) the role of support groups. Conclusions These qualitative data reflect the heterogeneity of experiences of the GVHD patient population, reflecting the need for a flexible and nuanced approach to patient care with emphasis on comprehensive information provision. We have identified the key role that BMT specialist nurses within the multidisciplinary team play in supporting patients. We advocate future research should focus on ways to meet the complex needs of this patient group and ensure that the personal care and close relationships are not lost in service redesigns embracing remote consultations.

The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: A qualitative exploration.

“…The themes generated from the patients' written accounts of their experiences were the uncertainty regarding the transfer to LTFU care, reassurance gained from remaining on a healthcare pathway, e cient and effective continuous relationships with healthcare professionals and the lack of information and expectation surrounding late-effect screening practices. The ndings are consistent with the results of previous studies, that close personal relationships with clinics were essential to receiving personal and attentive care to maintain health and that for some patients fear of recurrence and uncertainty was associated with monitoring practices [19][20][21]. However, the patients' accounts depict the complexities, uncertainty, and psychological impact on HSCT recipients as they navigate the LTFU healthcare pathway to ensure continuity of care.…”

“…Literature observing the LTFU monitoring from recipients' perspectives post-2015 is limited, with only three qualitative studies identi ed [19][20][21]. All three studies found that recipients established close relationships with clinical personnel, which was seen as a crucial element to receiving personal and attentive care, as well as maintaining health.…”

Patient and Provider Perspectives on the Impacts of Unpredictability for Patient Sensemaking: Implications for Intervention Design

“…Patients must cope with "enduring uncertainty" (8) that extends well beyond the procedure. The unpredictability of recovery can lead to anxiety (9)(10)(11)(12), challenges in selfmanagement of complications (13), and frustration with the inability to plan for the future (14). Even patients who recall being warned about transplant challenges may still be surprised by and unprepared for the severity of complications, their duration, and the effects on their lives (15)(16)(17).…”

Improved Therapeutic Approaches are Needed to Manage Graft-versus-Host Disease

“…Lee et al [ 37 ] in 2006 reported that patients who develop aGvHD show a profound and lasting decline in their QoL compared to those who do not develop GvHD. Patients with acute or chronic GvHD may feel uncertain about the nature of GvHD and its progression, as well as struggling to deal with their symptoms and to accept new restrictions to their daily life caused by GvHD and related treatment [ 38 ].…”