Increased Confidence and Deeper Understanding of Fatigue Following Participation in Fatigue Education and Management Education in Systemic Sclerosis: A Mixed Methods Evaluation of a Virtual Intervention

Abstract

Objective No fatigue‐specific programs exist for people with systemic sclerosis (SSc) despite the burden of fatigue and negative impact on daily activities. This study used a convergent parallel mixed methods design to evaluate the impact of an adapted virtual intervention, Fatigue and Activity Management Education in Systemic Sclerosis (FAME‐iSS), in the United States. Methods Eighteen people with SSc participated in three separate six‐week FAME‐iSS programs. Participants completed the modified Fatigue Impact Scale (m‐FIS), the Self‐Efficacy for Performing Energy Conservation Strategies Assessment (SEPESCA), the Patient‐Reported Outcomes Measurement Information System (PROMIS) Self‐Efficacy for Managing Symptoms, and the Hospital Anxiety and Depression Scale (HADS) before, immediately after, and three months post intervention. Data were analyzed using descriptive and nonparametric inferential statistics. Participants’ perceptions of the program and their use of fatigue management strategies were qualitatively analyzed using content analysis. Results Eighty‐nine percent of participants were women with a mean ± SD age of 52.0 ± 11.6 years and a mean ± SD disease duration of 13.7 ± 14.5 years, and more than 70% had a college degree. Significant improvements were observed for self‐efficacy on the PROMIS Self‐Efficacy for Managing Symptoms (P = 0.002) and SEPESCA (P = 0.016) immediately post intervention, which continued to significantly improve up to the three‐month follow‐up (P = 0.006 and 0.035, respectively). Significant improvements were also observed for the m‐FIS between baseline and the three‐month follow‐up (P = 0.029). Participants reported a deeper understanding of fatigue and that they liked sharing strategies and experiences with each other along with the facilitator, citing that “there was a power in our group because we had a common condition.” Conclusion FAME‐iSS resulted in improvements in the impact of fatigue and self‐efficacy for managing symptoms and performing energy conservation strategies. Feedback was positive, and the virtual format allowed for greater accessibility and sharing of strategies.