Mark Greveling, Stefano Rodolfi, Nora El Bardai, Christopher P Denton, Voon H Ong, Nick Jeffrie S-Owen, Rita Schriemer, Lieke Tweehuysen, Julia Spierings
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引用次数: 0
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.
期刊介绍：
Rheumatology strives to support research and discovery by publishing the highest quality original scientific papers with a focus on basic, clinical and translational research. The journal’s subject areas cover a wide range of paediatric and adult rheumatological conditions from an international perspective. It is an official journal of the British Society for Rheumatology, published by Oxford University Press.
Rheumatology publishes original articles, reviews, editorials, guidelines, concise reports, meta-analyses, original case reports, clinical vignettes, letters and matters arising from published material. The journal takes pride in serving the global rheumatology community, with a focus on high societal impact in the form of podcasts, videos and extended social media presence, and utilizing metrics such as Altmetric. Keep up to date by following the journal on Twitter @RheumJnl.
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