DOI: 10.6084/m9.figshare.15167123
title: The association between hand disease severity and fatigue in individuals with systemic sclerosis: a scoping review

description: Hand disease severity in people with systemic sclerosis (SSc) arises from connective tissue and vascular changes causing functional limitations, pain, and disability. Fatigue is not well-understood in SSc and reported to be highly distressing. It is not known how fatigue relates to these disease changes. The objective of this study was to identify which elements of hand disease severity contribute to fatigue in individuals with SSc. Five online databases and Google Scholar were searched to identify publications through 2021 presenting data related to hand disease severity and fatigue. Five articles met the inclusion criteria. The samples were 72–91% female, and 35–100% with diffuse SSc. Measures of disease severity included skin thickening (modified Rodnan score), joint involvement (mobility, tenderness, swelling), and digital ulcers. Fatigue was measured by various self-report. Joint involvement was strongly associated with fatigue. Skin thickening weakly associated with fatigue. The perceived interference of digital ulcers in daily activities was related to fatigue. Few studies have examined how fatigue relates to hand disease severity. While joint involvement was associated with fatigue over time and in cross-sectional studies, digital ulcers may be associated with fatigue indirectly. A conceptual model is proposed with implications for future research.Implications for RehabilitationStructural disease changes that manifest in the hands, is often associated with pain, disability, and fatigue in SSc.Fatigue is one of the most distressing symptoms of SSc and reported by 61–90% of individuals with SSc, but is not well characterized.Of measures of hand disease severity, joint involvement (contractures, swollen and tender joints) is most associated with fatigue in individuals with SSc and more so if pain is involved.A better understanding of the physiological features of disease and fatigue could provide insight into development of fatigue management interventions and help rheumatology providers work with patients to manage their fatigue.Rehabilitation assessments and interventions for hand disability need to be considered as important elements in improving all elements of quality of life for individuals with systemic sclerosis. Structural disease changes that manifest in the hands, is often associated with pain, disability, and fatigue in SSc. Fatigue is one of the most distressing symptoms of SSc and reported by 61–90% of individuals with SSc, but is not well characterized. Of measures of hand disease severity, joint involvement (contractures, swollen and tender joints) is most associated with fatigue in individuals with SSc and more so if pain is involved. A better understanding of the physiological features of disease and fatigue could provide insight into development of fatigue management interventions and help rheumatology providers work with patients to manage their fatigue. Rehabilitation assessments and interventions for hand disability need to be considered as important elements in improving all elements of quality of life for individuals with systemic sclerosis.