Background/Purpose: People with systemic sclerosis (SSc) have a high burden of chronic symptoms that have dramatic effects on function and quality of life. Fatigue, along with pain, sleep disturbance, and physical limitations, affects the ability to fulfill life roles. Unfortunately, relevant interventions that can help people with SSc learn skills to manage fatigue and co-occurring symptoms and to improve wellbeing are not currently available in clinical care and are urgently needed. This pilot study examined feasibility and preliminary effects of a web-based intervention called the Resilience-Based Energy Management Program to Enhance Wellbeing (RENEW) intervention.

Methods: Participants with SSc and had access to a reliable, internet-connected device were enrolled. The study design was a one arm, pretest-posttest trial. The intervention involved 12 weeks of working on health goals based on online modules. Trained “peer” health coaches, who also had an SSc diagnosis, assisted in establishing goals and checking on progress during regular calls (10 over the study). We examined feasibility metrics (recruitment/retention rates, and coach call participation), symptom outcomes, patient global impression of change (PGIC), and end-of-program feedback. Outcomes were assessed at baseline, mid-treatment (6 weeks) and 12 weeks, including PROMIS29 and perceived self-efficacy to manage the condition. Participant characteristics and feasibility metrics were analyzed using descriptive statistics. One-way repeated-measures analysis of variance (ANOVA) was used to analyze changes in outcomes over time. SPSS 24.0 was used for analyses, and statistical significance was set at p < 0.05.

Results: Twenty-two participants consented, 21 completed baseline questionnaires; of these, 19 (90%) completed 12-week questionnaires. Participants had a mean age of 54 ± 11 years, (range 25 – 67), 64% were female, and 90% were White (Table 1). Of the 21 participants, 43% had diffuse SSc, 48% had limited SSc, and 9% had overlap. Mean health coach call participation was 9 calls + 1.1. Among completers of the program, 13 (68.4%) rated overall quality of this program as excellent and 6 (31.6%) rated as good. 72% of participants reported moderate to great improvements on the PGIC. Over the 12 weeks, significant improvements were not shown in symptoms (Table 2), however, 50% of participants had improvements from baseline in sleep disturbance and 44% had improvements in anxiety, pain interference, and fatigue. A significant improvement was found in perceived self-efficacy in medications management (p = 0.01). Although perceived informational support increased, results did not reach statistical significance (p = 0.08). 95% of people (18/19) felt the program helped them stay positive; 89% said it improved their mood. Participants reported that health coaching was important to them and 63% said talking to someone with their condition was what they liked best.

Conclusion: A 12-week program addressing SSc symptom management with peer health coaches was feasible to deliver and was positively viewed by patients. Health coaching by trained peers was particularly valuable to patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/symptom-management-in-systemic-sclerosis-a-pilot-study-of-a-web-based-intervention-using-peer-health-coaches/