Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease

• DOI: 10.1002/msc.1617
• Publication Date: 2022-02-06T09:08:20Z
• Authors: Kristine Carandang; Janet Poole; Deirdre Connolly
• Keywords: Attendance

Abstract Purpose Fatigue is an overlooked symptom for musculoskeletal diseases, including rare conditions like systemic sclerosis (SSc). The purpose of this study were the following: (1) to adapt content and delivery method existing fatigue intervention, (2) determine feasibility Activity Management Education in Systemic Sclerosis (FAME‐iSS). Methods In Phase 1 adaptations recorded using Framework Modification Adaptations. 2, participants completed 6‐week FAME‐iSS intervention baseline, post‐intervention, 3‐month follow‐up assessments measuring levels, impact, mental health, self‐efficacy, use energy conservation strategies. Qualitative data included a post‐intervention focus group interviews. Results Three main changes made original intervention: was adapted from management Lupus‐related SSc‐related fatigue, context Ireland United States, (3) in‐person online format. Participants ( n = 4) 51.8 ± 12.1 years old, had been diagnosed with SSc 12.0 8.0 years, receiving disability support, college degrees. All 100% attendance all activities. positive comments about programme format, content, implementation. Post‐intervention, improvements observed most measures. Moderate effect sizes noted self‐efficacy scores. Conclusion Participants' responses supported need people SSc. Even small sample, led format allowed participation sharing ideas, especially during global pandemic.