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<p>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 (<i>N</i> = 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 &lt; 0.05 or &lt; 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.</p><p><b>ClinicalTrials.gov #</b>: NCT05980104.</p>

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Online 1-session Empowered Relief in Marfan syndrome and related diseases: a single-arm feasibility and pilot efficacy study

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年1月6日

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  • Luzmercy Perez,
  • Paige Palenski,
  • Emma Adair 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

摘要

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.