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

Q: What was the purpose of the ER study in people with Marfan syndrome?

To evaluate feasibility and pilot efficacy of an evidence-based, evidence-based 1-session pain relief skills class delivered online to adults with Marfan syndrome or related diseases.

Q: How were participants assessed in the study?

Data were collected at baseline, immediately post-treatment, and during follow-up months 1–3, with symptom changes estimated using mixed effects model for repeated measurements regression modeling.

Q: What outcomes improved by 3 months?

Pain intensity and pain interference improved significantly, and all secondary outcomes (including pain catastrophizing and anxiety) also improved with p-values reported as <0.05 or <0.001.

Sep 30, 2026

Uploaded by Eliana

Online 1-session Empowered Relief (ER) was evaluated in a non-randomized feasibility and pilot efficacy study for adults in the United States with chronic pain and a self-reported Marfan syndrome or related connective tissue diagnosis. ER was delivered online to a single national cohort with assessments at baseline, immediately post-treatment, and 1–3 month follow-up. In 92 participants, attendance and appraisal supported feasibility. At 3 months, pain intensity and pain interference improved significantly, along with all secondary outcomes, supporting justification for a future randomized trial.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages13

Reading Time33 min

AccessFree to download

Study design and participant recruitment

Outcomes and statistical approach

Primary outcomes

Secondary outcomes

Feasibility, results, and limitations

Background on pain burden in Marfan syndrome

Comorbid psychological factors

Related connective tissue diseases and interventions

[www. nature.com/scientificreports](www. nature.com/scientificreports) OPEN Online 1-session Empowered Relief in Marfan syndrome and related diseases: a single-arm feasibility and pilot efficacy study Luzmercy Perez1, Paige Palenski1, Emma Adair Monson1, Lorena Contreras1, Brittany Dorsonne1, ArayamY. Hailu1, Kendall Gedeon2, Hannah Boyd1, Maisa Ziadni1, Ashley Herrick1, Andrea Friedman3, Jiapeng Xu4, Juliette Hong1, Lu Tian4 & Beth D. Darnall1􀀍 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](ClinicalTrials.gov #: NCT05980104) . Keywords Chronic pain, Behavioral health, Treatment, Rare disease, Ehlers-Danlos, Loeys-Dietz Marfan syndrome, Vascular Ehlers-Danlos syndrome, Loeys-Dietz syndrome, and other similar rare connective tissue diseases are often painful and can be debilitating. A systematic review reported the prevalence of pain among people with Marfan to vary from 47% to 92%, with pain commonly affecting multiple anatomic sites1–3. While sparse research exists, multiple studies suggest that the burden of Marfan syndrome is higher among those reporting pain4. Cross-sectional survey research involving 245 people with Marfan syndrome documented that poor mental health and psychological symptoms were notably higher among those with pain2. Others have documented fatigue, depression and anxiety among people with Marfan syndrome and comorbid chronic pain1. Moreover, with cardiac comorbidities being common in Marfan, a complex interplay can exist between cardiovascular parameters and psychological factors. For instance, anxiety about aortic dissection and fear avoidance behaviors can reinforce sedentary behavior and related health risks. A recent randomized controlled study investigated a 3-month structured online personal training program in patients with Marfan syndrome, showing beneficial cardiopulmonary, muscular and vascular effects5. An accessible and brief behavioral pain relief skills intervention could nicely complement this and other physical and medical interventions for Marfan syndrome to achieve broader benefits, and it could serve as a standalone pain treatment. 1Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, USA. 2Palo Alto University, Palo Alto, CA, USA. 3The Marfan Foundation, Port Washington, NY, USA. 4Department of Biomedical Data Science (and by courtesy) Statistics, Stanford University School of Medicine, Palo Alto, CA, USA. 􀀍 email: [bdarnall@stanford.edu](bdarnall@stanford.edu) [www. nature.com/scientificreports/](www. nature.com/scient

FAQs

What was the purpose of the ER study in people with Marfan syndrome?

To evaluate feasibility and pilot efficacy of an evidence-based, evidence-based 1-session pain relief skills class delivered online to adults with Marfan syndrome or related diseases.

How were participants assessed in the study?

Data were collected at baseline, immediately post-treatment, and during follow-up months 1–3, with symptom changes estimated using mixed effects model for repeated measurements regression modeling.

What outcomes improved by 3 months?

Pain intensity and pain interference improved significantly, and all secondary outcomes (including pain catastrophizing and anxiety) also improved with p-values reported as <0.05 or <0.001.

Sep 30, 2026

Uploaded by Eliana