Luzmercy Perez, Paige Palenski, E. M. Monson, Lorena Contreras, Brittany Dorsonne, Arayam Y Hailu, Kendall Gedeon, Hannah Boyd, Maisa Ziadni, Ashley Herrick, Andrea Friedman, Jiapeng Xu, Juliette Hong, Lu Tian, Beth D. Darnall
Marfan syndrome is a rare and often painful genetic disorder that affects connective tissue, and multiple organs and systems. We conducted a non-randomized feasibility and efficacy study of Empowered Relief, an evidence-based 1-session pain relief skills class, delivered online to a single national cohort of individuals with Marfan and related diseases. Adults in the United States with chronic pain and a self-reported diagnosis of Marfan or related diseases were recruited via The Marfan Foundation. Data were collected at baseline; immediately post-treatment; and at follow-up months 1–3. Symptom changes from baseline were estimated using mixed effects model for repeated measurements regression modeling. Participants (N = 92) were: 69(75%) female; with a mean age of 48 years (SD = 15); 78(85%) White. Attendance (80.7%) and treatment appraisal ratings (80%) supported feasibility for large group treatment. At 3 months, pain intensity and pain interference (primary outcomes) were significantly improved; as well as all secondary outcomes (e.g., pain catastrophizing, anxiety, and other variables) (p-values either < 0.05 or < 0.001). Limitations include a single-arm design and an 85% White sample. Multidimensional symptom reduction at 3 months justifies a future randomized trial. Results suggest promise for large size, online, brief behavioral pain care for people with Marfan and other rare disease.ClinicalTrials.gov #: NCT05980104.