PURPOSE: Hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS) are multisystem conditions marked by dysfunctional connective tissue. This feasibility study evaluated a 9-week integrative medicine program in this population.
METHODS: Using a single-arm study design, adults with HSD or EDS were given recommendations for an anti-inflammatory Mediterranean diet and self-management with additional behavioral and psychosocial support. Preliminary data on feasibility based on recruitment and retention, adherence to the diet, mobile app tracking, changes to perceived well-being via health outcomes, and satisfaction with care were obtained.
RESULTS: Thirteen participants were enrolled within a 4-month timeframe. Eight participants completed the study. Three participants met dietary tracking requirement in at least 4 of 8 intervention weeks and met the macronutrient requirements in at least half of the weeks tracked. No decreases in VAS pain scores after 5 and 9 weeks were noted; however, 62.5% ( = 5) of participants had decreased pain at 9 weeks, compared to baseline. There were significant improvements (<.05) in six of twelve measurements of satisfaction with care at the end of the intervention.
CONCLUSION: This study provides a foundation for future research on patient experience and introduces a novel treatment paradigm focused on nutrition and self-management.
Trial Registration: National Institutes of Health clinicaltrials.gov; identifier: NCT04734041.
