Treatment Modalities, Pain Response, and Referrals for Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders: A Retrospective Study

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Objective To gain a better understanding of preferred treatment modalities and referrals to better treat and manage pain symptoms, we conducted a retrospective longitudinal cohort study of patients with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Patients and Methods A retrospective analysis of self-reported data in 290 patients diagnosed with hEDS or HSD according to the 2017 Criteria from November 1, 2019, to June 12, 2023, who completed intake and outtake questionnaires. Patients were asked questions on the severity of hypermobile, joint and muscle pain, and whether clinical referral and/or medications/treatments improved their pain. Results Less than 30% of patients with hEDS and HSD reported improvement of hypermobility, joint or muscle pain from any of 17 treatment modalities listed in the outtake questionnaire. Patients self-reported that physical activity/exercise significantly or borderline significantly improved pain symptoms (hypermobility pain hEDS, n=36 (46.8%) vs 10 (76.9%), P =.07; HSD, n=77 (47.8%) vs 16 (88.9%), P =.001; joint pain hEDS, n=29 (45.3%) vs 17 (73.9%), P =.03; HSD, n=59 (42.8%) vs 32 (86.5%), P <.0001; muscle pain hEDS, n=25 (44.6%) vs 12 (75.0%), P =.05; HSD, n=59 (45.4%) vs 25 (89.3%), P <.0001), whereas patients with HSD reported that physical therapy also improved pain (hypermobility pain HSD, n=78 (48.5%) vs 15 (83.3%), P =.006; joint pain HSD, n=62 (44.9%) vs 28 (75.7%), P =.001; muscle pain HSD, n=60 (46.2%) vs 20 (71.4%), P =.02). In contrast, patients with hEDS reported that topical medications made their muscle pain worse (n=27 (48.2%) vs 3 (18.8%), P =.05) and patients with HSD that injections made their joint pain worse (n=39 (28.3%) vs 4 (10.8%), P =.03). Most patients reported that referrals improved their pain. However, 40% or more reported that referrals to allergy and immunology and rheumatology departments worsened their pain. Conclusion This study identified patient perceptions on treatments and referrals that improved or made their pain worse. These findings provide a starting point for future treatment guidelines, decision aids, and research on patient-reported outcomes.

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