Background/Purpose: Fatigue remains an understudied symptom of systemic sclerosis (SSc). For other diagnoses, increasing the use of energy conservation strategies, especially pacing. has been associated with reduction in fatigue. The purpose of this ongoing study is to understand the use of energy conservation strategies after participation in a new program, Fatigue and Activity Management Education for Individuals with Systemic Sclerosis (FAME-iSS).

Methods: Adult participants were recruited from the Scleroderma Foundation chapters to participate in a 6-week, virtual, occupational therapist-led group program focused on SSc-related fatigue. Eligible participants had a minimum score reflecting moderate to high fatigue experienced, severity, and distress (scales: 1-10). At baseline, participants completed a demographic questionnaire, the Self-Efficacy for Performing Energy Conservation Strategies Assessment (SEPESCA) to measure their confidence in their ability to use energy conservation strategies. At post-intervention and 3-month follow-up, participants also completed the Energy Conservation Strategies Survey 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 were analyzed; medians and ranges for assessment scores are reported.

Results: Preliminary analysis includes four participants (75% White women; 51.8±12.1 years old) with established SSc (disease duration= 12±8.0 years). All participants completed 100% of FAME-iSS sessions. At post-intervention, all energy conservation strategies were being used by at least 50% of participants, and 7/14 strategies were being used by 75% of participants. Participants perceived effectiveness of strategies as high [8 (3-10)]. The most common cited reason for not adopting a new strategy after the intervention was that it was already in use (17/21 items; 81%). At 3-month follow-up, 11/14 strategies were used by at least 50% of participants, and 5/14 strategies were used by 75% of participants. Perceived effectiveness slightly decreased [7 (2-10)]. While not statistically significant, participants trended toward improved self-efficacy scores for energy conservation strategies (baseline: 8.3 (5.4-8.0); post-intervention: 9.2 (8.3-9.2); 3-month follow-up: 9.6 (4.4-10)]. Participants qualitatively reported that FAME-iSS led to the sharing of new fatigue management strategies and increased attention to their daily activities.

Conclusion: Despite longer disease duration and familiarization with self-management strategies, participants with SSc experienced persistent and disruptive fatigue symptoms. Following completion of FAME-iSS, participants with established SSc adopted new behaviors that they perceived to effectively reduce fatigue. A second round of the intervention is in progress to diversify the participant sample and continue assessing the relationship between FAME-iSS, energy conservation strategies, and quality of life constructs.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/use-of-energy-conversation-strategies-as-a-result-of-the-fatigue-management-education-for-individuals-with-systemic-sclerosis-fame-iss/