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

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