HEALTH-RELATED quality of life (HRQOL) among adults with cutaneous chronic graft-versus-host disease (GVHD) is significantly impacted by skin-related changes, leading to impaired social, psychological, and physical functioning as well as diminished general health perceptions.
Cutaneous chronic GVHD is a complication of allogeneic hematopoietic cell transplantation, independently contributing to patient morbidity and mortality. This study sought to understand the HRQOL domains most affected by the condition by conducting a concept elicitation study involving 31 adults. Participants, purposefully sampled to represent epidermal and sclerotic disease features, provided insights through semistructured interviews and free-listing terms, conducted until thematic saturation was achieved.
Analysis of the interviews revealed five primary HRQOL domains affected by cutaneous chronic GVHD: skin changes and symptoms, social functioning, psychological and emotional functioning, physical functioning, and general health perceptions. Dry skin (65%), tight skin (61%), itch (48%), and discolouration (45%) emerged as the most frequent and distressing symptoms, reported across disease subtypes. Social functioning impairments were universally acknowledged, while psychological effects, such as frustration (Smith S score: 0.32) and worry (Smith S score: 0.12), were highly salient. Physical symptoms like discomfort (Smith S score: 0.20) further exacerbated challenges. Individual and environmental factors, such as disease duration and social comparison, shaped patients’ perceptions and experiences, highlighting the complex interplay between symptoms and overall HRQOL.
These findings underscore the profound impact of cutaneous chronic GVHD on patients’ lives, independent of extracutaneous involvement. The domains and codes identified in this study provide a foundation for developing patient-reported outcome measures with strong content validity, which are essential for use in clinical trials. Furthermore, the results can guide clinicians in understanding patient priorities, thereby improving care delivery and decision-making. Future efforts should focus on refining and implementing outcome measures that address the multidimensional effects of this condition, ensuring they are both patient-centred and relevant to clinical practice.
Jenna Lorge, EMJ
Reference
Baumrin E et al. Outcomes of Importance to Patients Living With Cutaneous Chronic Graft-vs-Host Disease. JAMA Dermatol. 2025;DOI:10.1001/jamadermatol.2024.5380.
