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  1. J. L. Poole1,
  2. D. Connolly2,
  3. K. Carandang3
  1. 1University of New Mexico, Occupational Therapy Graduate Program, Albuquerque, United States of America
  2. 2Trinity College, Discipline of Occupational Therapy, Dublin, Ireland
  3. 3University of Wisconsin-River Falls, Young Patients’Autoimmune Research & Empowerment Alliance, River Falls, United States of America


Background Fatigue is one of the most prevalent and disabling symptom of systemic sclerosis (SSc). No fatigue specific programs exist for people with SSc despite the negative impact on daily life activities. However, recent literature has shown that using pacing and other energy conservation strategies, has been associated with reduction in fatigue.

Objectives The purpose of this pilot study was to evaluate changes in self-efficacy and use of energy conservation strategies after participation in Fatigue and Activity Management Education for Individuals with Systemic Sclerosis (FAME-iSS).

Methods Adult participants were recruited from the Scleroderma Foundation chapters and social media to participate in a 6-week, virtual group program focused on SSc-related fatigue. Inclusion criteria: ≥18 years of age, access to device with videoconferencing capabilities, and at least moderate fatigue determined by degree, severity, and distress (scales: 1-10). The program, led by occupational therapists included sessions on factors related to fatigue, management of energy, pain, stress, physical activity and nutrition. At baseline, participants completed a demographic questionnaire, the Self-Efficacy for Performing Energy Conservation Strategies Assessment (SEPESCA) to measure confidence using energy conservation strategies. At post-intervention and 3-month follow-up, participants also completed the Energy Conservation Strategies Survey (ECSS) to identify use and effectiveness of 14 energy conservation strategies (e.g. changing body positions, planning and prioritizing, communicating needs) and a qualitative interview to contextualize their responses. Descriptive statistics (means, standard deviations) were used to analyze quantitative data.

Results The sample for the pilot study included 18 participants (89% women; age 52 ± 11.6 years) with established SSc (disease duration= 13.7 ± 14.5 years). 83% participants completed 100% of FAME-iSS sessions.

Directly following the program all 14 energy conservation strategies were used by at least seven (39%) participants. The most frequently used strategy was “planned day to balance rest and activity” which was used by 17 participants post-intervention. (see Table 1). At the three-month follow-up the there was a decline in use for 50% of the strategies and an increase in use for the other 50%. Of those who reported not using energy conservation strategies, the most frequent reason provided by participants was that they were already using the strategy prior to attending FAME-iSS. The mean strategy effectiveness scores varied at both time points with “adjusting priorities” the most effective strategy at T2 and “delegating activities” the most effective at T3. While not statistically significant, participants trended towards improved self-efficacy scores for energy conservation strategies (baseline: 6.8 (2) post-intervention: 8.1 (1.4); 3-month follow-up: 8.4 (2.8) Participants qualitatively reported that FAME-iSS led to the sharing of new fatigue management strategies and increased attention to their daily activities.

Conclusion This pilot study showed that FAME-iSS resulted in increased self-efficacy in use of energy conservation strategies in participants with established SSc. New behaviors were adapted that participants felt reduced their fatigue. The virtual format allowed for sharing of strategies and availability to more people.

Disclosure of Interests None declared

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