Self-Management Principles Applied to Fatigue Management for a Rare Chronic Disease,Systemic Sclerosis

Fatigue is a pervasive symptom prevalent in many chronic conditions, including systemic sclerosis (SSc), a connective tissue disease1. Fatigue affects participation in all activities of daily life.2 No fatigue interventions exist for SSc. While energy conservation is part of occupational therapy, we propose that fatigue be approached from a self-management perspective focusing on goal setting, accountability, peer support and problem solving3.

PURPOSE: Examine the impact of Fatigue and Activity Management Education for Systemic Sclerosis (FAME-iSS) on self-efficacy and fatigue.

DESIGN: Pre-test post test.

METHOD: Participants recruited from the Scleroderma Foundation website and social media. Inclusion criteria: >18 years of age, moderate fatigue, and access to videoconferencing device. At pre/post intervention and 3-month follow-up, participants completed a battery of self-reports on fatigue impact and energy conservation strategies use.3 The intervention, a 6-week virtual program, met 1.5 hour weekly via zoom. At each session, participants set goals for the next session and reported on goal achievement from the last session.

RESULTS: 18 participants completed the study (89% women, mean age 52 ± 11.6 years, mean disease duration 13.7 ± 14.5 years). Significant improvements found post intervention and at 3 months for fatigue (p=.004), fatigue self-efficacy (p = .002) and energy conservation strategy use (p = .016). 83% attended 100% of sessions.

CONCLUSION: FAME-iSS led to decreased fatigue and increased self-efficacy in energy conservation strategy use. Individual feedback revealed that new behaviors were adopted that reduced fatigue, supporting the objective improvements observed on the self-reports.

IMPACT STATEMENT: Fatigue, a major barrier to participation in meaningful occupations in chronic conditions, receives minimal attention in occupational therapy. Our proposal describes a virtual occupational therapy self-management approach to fatigue.

References

Basta, F., Afeltra, A., & Margiotta, D. (2018). Fatigue in systemic sclerosis: A systematic review. Clinical & Experimental Rheumatology, 36, Suppl 1 (4), 150–60.

Murphy, S.L., Kratz, A., Whibley, D., Poole, J.L., & Khanna, D. (2021). Fatigue and its association with social participation, functioning and quality of life in systemic sclerosis. Arthritis Care & Research, 73 (3), 415–422. https://doi.org/10.1002/acr.24122

Carandang, K, Poole, J.L., & Connolly, D. (2022). Fatigue and activity management education for individuals with systemic sclerosis (FAME-iSS): Adaptation and feasibility study of an intervention for a rare disease. Musculoskeletal Care. 20(3), 593–604 https://doi.org/10.1002/msc.1617