Researchers found that a web-based, peer-coaching program to address systemic sclerosis symptom management was both a viable intervention and viewed positively by participants.

This study presented at the American College of Rheumatology Convergence meeting by Susan Murphy, OT, ScD, an associate professor at University of Michigan.

For patients with systemic sclerosis, chronic symptoms such as fatigue, pain, sleep disturbance, and physical limitations all have a negative impact on function and quality of life. However, interventions that would help patients to manage symptoms and improve their general wellbeing are not currently available in most clinical care settings.

This pilot study sought to determine the feasibility and preliminary effects of a web-based program called the Resilience-Based Energy Management Program to Enhance Wellbeing (RENEW). Twenty-two participants were enrolled in the 12-week program. The program included online modules and trained peer coaches, who also had a diagnosis of systemic sclerosis. Participants learned about and established health goals and discussed those goals with their peer coaches over a series of 10 calls.

The participants that were enrolled all had systemic sclerosis, and access to a device with reliable internet connection. Of the participants, 43% had diffuse systemic sclerosis, 48% had limited, and 9% had overlap. Participants had a mean age of 54 (range 25 – 67), with 64% female and 90% White. Researchers examined feasibility metrics (recruitment/retention rates and coach call participation), symptom outcomes, patient global impression of change (PGIC), and end-of-program feedback. Researchers assessed the outcomes at baseline, mid-treatment (6 weeks), and 12 weeks.

Of the 22 participants, 21 completed baseline questionnaires, and 19 of those 21 participants completed the 12-week questionnaire for a 90% rate of completion. Out of the participants that completed the program, 13 (68.4%) rated the overall quality as excellent, while 6 (31.6%) rated it as good. On PGIC, 72% of participants reported moderate to great improvements.

Although the researchers did not find a significant improvement in symptoms among participants, 50% of patients improved from the baseline in sleep disturbance, and 44% had improvements in anxiety, pain interference, and fatigue. Similarly, there was no statistically significant improvement on perceived informational support, but patients reported an increase of this metric (p = 0.08). Improvement in perceived self-efficacy in medication management was significant (p = 0.01).

Overall, the program was viewed positively by participants, with 95% reporting that they felt the program helped them stayed positive, and 89% that it improved their mood. Researchers highlighted that the “health coaching by trained peers was particularly valuable to patients,” as 63% of participants stated that talking to someone with their condition was what they liked best.

—Allison Casey

Reference

Murphy S, et al. Symptom management in systemic sclerosis: A pilot study of a web-based intervention using peer-health coaches. Presented at: The American College of Rheumatology Convergence meeting. November 12-15; virtual.