Background/Purpose: Fatigue is one of the most prevalent and disabling symptom reported by people with systemic sclerosis (SSc). No fatigue-specific programs exist for people with SSc despite the negative impact on daily life activities. Fatigue and Activity Management Education (FAME-ISS) is a six-week virtual program led by occupational therapists that was adapted for SSc. Topics covered factors related to fatigue, management of energy, pain and joint protection, stress, physical activity, and nutrition. Each session consisted of education and goal setting. The purpose of the study was to assess the impact of FAME-iSS on fatigue management and self-efficacy in persons with SSc.

Methods: Participants were recruited from the National Scleroderma Foundation newsletter and chapters. Inclusion criteria were older than 18 years of age, access to device with videoconferencing capabilities, and at least moderate fatigue determined by degree, severity, and distress (scales: 1-10). Three separate six-week programs were facilitated with 18 people with SSc. Participants completed a demographic questionnaire, and self-report measures for fatigue and self-efficacy: the Multidimensional Assessment of Fatigue (MAF), Modified Fatigue Impact Scale (m-FIS), Hospital Anxiety and Depression Scale (HADS), Self-Efficacy for Performing Energy Conservation Strategies Assessment (SEPESCA), and PROMIS Self-Efficacy for Managing Symptoms. Data collection occurred before, immediately after, and three months post-intervention. Data were analyzed using descriptive and nonparametric inferential statistics. Participants also gave qualitative feedback on the program.

Results: Two men and 16 women participated in the study. Mean age was 52.0± 11.6 years, disease duration was 13.7 ± 14.5 years, 61% were non-Hispanic white, over 70% completed a college degree and 72% were married. Significant improvements were seen in median scores for fatigue on the MAF (p=.004), self-efficacy for managing symptoms (p=.002) and the SEPESCA (p=.016) immediately post-intervention which continued to significantly improve between post-intervention and the three-month follow-up (p values = .001, .006, .035 respectively). Significant improvements were also observed for the m-FIS between baseline and the three-month follow up (p=.029). Participants reported that the format and content of FAME-iSS allowed for them to “dig deeper” into the relationship between their scleroderma, fatigue, and behaviors that were in their control. Complementing educational components led by facilitators, participants liked being able to share strategies and experiences with one another, citing that “there was a power in our group because we had a common condition.”

Conclusion: The findings suggest that FAME-iSS resulted in improvements in the impact of fatigue, self-efficacy for managing symptoms and performing energy conservation strategies in persons with established SSc. Feedback from the participants was positive and the virtual format allowed for greater accessibility and sharing of strategies amongst the participants.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/impact-of-a-fatigue-and-energy-management-program-for-persons-with-systemic-sclerosis-fame-iss-a-pilot-study/