Impact of Chronic Graft-versus-Host Disease on Patient and Caregiver Experiences in the United States: A Retrospective Social Media Analysis

BACKGROUND: Social media listening (SML) offers a unique approach to understanding the lived experiences of patients with chronic graft-versus-host disease (GVHD) and encompasses diverse voices from various socio-economic backgrounds. OBJECTIVE: To use SML to better understand the lived experiences of patients with chronic GVHD and their caregivers in the United States. STUDY DESIGN: A search syntax identified relevant posts from public social media platforms (X [formerly Twitter], TikTok, Instagram, Reddit, Facebook, YouTube, podcasts, forums, and blogs) in the United States between September 1, 2022, and September 1, 2024. A core analytic set about chronic GVHD was identified after removing posts from nonrelevant stakeholders and those containing exclusionary terms or overt acute GVHD mentions. This isolated set of posts was analyzed for descriptive information on chronic GVHD content. A smaller subset of posts was randomly selected and manually coded to create the qualitative analysis set, which was interpreted by natural language processing through an AI-driven qualitative research tool and a netnographic method to identify themes. RESULTS: A total of 12,476 relevant posts were captured during the study period, of which 5,051 and 1,278 were included in the core analytic set and the qualitative analysis set, respectively. Overall, 71% of posts in the qualitative analysis set were from patients, 15% from caregivers of pediatric patients, and 4% from caregivers of adult patients. Four key themes were identified: physical, mental, and emotional burden; treatment experiences; ways of coping; and burden on caregivers. The most common (39%) source of posts in the core analytic set was X. Skin was the most mentioned organ, and trauma, defined as traumatic experiences or feelings, was the type of emotional burden most commonly cited in conjunction with an organ or specific treatment. There were multiple physical, mental, and emotional burdens of chronic GVHD, with dry eyes, feelings of anxiousness, and struggles with the sense of self being the most common in each respective category. Overall, tacrolimus and ruxolitinib were the most frequently mentioned treatments. GVHD treatments were challenging for patients and caregivers due to variable efficacy, side effects, time consumption, and/or high costs. Patients sought specialized care from their health care professionals and often used online communities for support. Caregivers described feeling burdened by their role, experiencing emotional distress, and needing to balance the demands of caregiving with other responsibilities. CONCLUSION: Using SML, we have gathered unique insights into the burden and impact of chronic GVHD onto the physical and mental health of patients. Currently, there is a need for improved access to more effective treatments to decrease patient and caregiver burden and improve their quality of life.