Impact of hand function impairment on daily life of patients with systemic sclerosis: a qualitative study

Abstract

OBJECTIVES: Many patients with systemic sclerosis (SSc) experience impaired hand function, yet the precise nature and impact of this impairment remains unclear. In this study, we explored the determinants of hand function impairment in SSc from a patient perspective and its impact on daily life. Additionally, we identified unmet care needs related to hand function impairment. METHODS: Adult patients with SSc were included from the University Medical Centre Utrecht, the Netherlands, and Royal Free Hospital London, United Kingdom (UK). Face-to-face semi-structured interviews were conducted, transcribed verbatim, and coded. Thematic analysis was performed to identify key themes. Hand function was evaluated using the modified Hand Mobility in Scleroderma (mHAMIS) and the Cochin Hand Function Scale (CHFS). RESULTS: Thirty-three patients were included (N = 18 in the Netherlands, N = 15 in the UK). Three main themes were identified: symptoms, impact, and (un)met needs. The symptoms theme captures the broad range of medical and functional complaints, often co-occurring and leading to significant hand function impairment. The impact theme describes how these symptoms limited daily activities, employment, and leisure, and contributed to emotional distress and social isolation. The (un)met needs theme highlights varied coping strategies and experiences with care. While participants felt that patient education was sufficient when healthcare professionals addressed hand impairment, many reported a lack of tailored support and insufficient recognition of hand-related problems. CONCLUSION: Hand function impairment in SSc profoundly affects patients' daily lives and well-being. Addressing this unmet need requires greater clinical awareness and more personalised and symptom-specific management strategies.