“It helps me stay on track”: patient experiences using a mobile app for self-management of systemic sclerosis with a focus on fatigue in women
Yen T Chen, Alexandra E Harper, Mary Alore, Elizabeth Haro, John T Morris, Dinesh Khanna, Susan L MurphyAbstract
Objectives
Fatigue is common and burdensome in people with systemic sclerosis (SSc), significantly impacting daily functioning and quality of life. Yet, it remains inadequately addressed in clinical care. This study aimed to explore participants’ experiences using the RENEW (Resilience-building Energy Management to Enhance Well-being) mobile app as a standalone self-paced intervention without peer coaching for fatigue self-management.
Methods
Semi-structured interviews were conducted with participants with SSc following completion of the 12-week RENEW mobile app intervention. Interviews were analyzed using RADaR (Rigorous and Accelerated Data Reduction) technique in combination with thematic content analysis.
Results
Fifteen women were included in the analysis (mean age 56 years ± 10), which reflects the higher prevalence of SSc among women. Among participants, 53% had limited SSc, while the remaining had diffuse SSc or overlap, and 40% had been diagnosed with SSc for less than 5 years (short duration). Four themes were identified: 1) the RENEW app and its features were intuitive; 2) the RENEW app’s content enhanced the learning experience; 3) the RENEW app became a partner to support SSc self-management; and 4) refinements to the app could enhance the patient experience.
Conclusion
The RENEW app was perceived as a relevant and user-friendly tool for supporting fatigue self-management in SSc. Findings suggest that a standalone app-based approach may offer a scalable option for fatigue self-management in SSc, while also highlighting areas for refinement to improve engagement and long-term use.
Clinical trial registration number
clinicaltrials.gov, NCT07402863.