Investigating the impact of chronic graft‑versus‑host disease on patient health‑related quality of life: perspectives from patients and carers

BACKGROUND: Chronic graft-versus-host disease (cGvHD) is a common complication that can occur following hematopoietic stem cell transplantation. This complex, multisystemic condition often requires multiple lines of therapy to treat both the symptoms of cGvHD and the side effects associated with these treatments. Comprehensive data on the impact of cGvHD on health-related quality of life (HRQoL) of patients who have undergone multiple lines of therapy, remain limited. Greater awareness of these challenges could lead to more personalized treatment plans and inform future research. METHODS: We performed a two-part study to gather qualitative and quantitative data on the experiences and HRQoL of adult patients with cGvHD who had received more than two lines of therapy. Participants took part in a virtual, in-depth interview moderated by a facilitator (qualitative interviews) and/or an online survey (quantitative survey). The qualitative interviews were conducted using a discussion guide, while the quantitative survey designed based on the responses to the qualitative interview also included the European Quality of Life 5 Dimensions 5 Level Version questionnaire. RESULTS: The qualitative interview included 10 participants, while the quantitative survey enrolled 27. patients reported that cGvHD has a profound impact on numerous aspects of HRQoL. Treatment side effects, treatment burden, frequency of medical appointments, and the impact on daily life, finances, education, and mental health were all contributors to diminished HRQoL. Patients reported feeling unprepared for the severity and longevity of cGvHD symptoms and highlighted the need for improved communication between healthcare professionals (HCPs) treating the same patient. CONCLUSIONS: cGvHD significantly impacts the HRQoL of patients, with physical, emotional, and financial burdens. Improved education and disease awareness, personalized treatment plans, and better communication between HCPs treating the same patient are crucial to address these challenges in current care practices. Enhanced support services could alleviate the emotional and financial impact on patients, ultimately improving their overall quality of life (QoL).