Outcomes and experiences of patients with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders undergoing surgical interventions: a scoping review.

There is limited knowledge amongst healthcare professionals regarding Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS), their multisystemic symptom presentations and how to effectively manage them. The current literature focuses on how physiotherapy is used to manage joint hypermobility and pain. This scoping review will therefore map the use of surgical interventions in patients with HSD/hEDS as well as the patient outcomes and experiences, identifying knowledge gaps and areas for future research. Using Arksey and O’Malley’s six-stage framework, we searched seven electronic databases with keywords relating to “hypermobility”, “surgery”, “experiences.” All study designs from 2003 to 2023 involving patients with HSD/hEDS were included. A supplementary search was conducted for any recent publications between 01 January 2024 and 01 October 2025. Data was extracted and summarised by pre-, intra-, and post-operative management, outcomes, and experiences. 36 studies were included, mainly case reports (n = 20; 56%), encompassing 9,479 patients with a female majority. 30 studies reported surgeries spanning nine specialties, most commonly orthopaedic, followed by neurosurgery, maxillofacial, gynaecology, thoracic, dental, endocrine, ophthalmology, and vascular. Six studies referenced patient experiences relating to surgical experiences. Our review found that most studies reporting surgical interventions had evidence deriving from small sample sizes, and a lack of long-term follow-up, limiting definitive clinical conclusions. We further highlighted a gap in the qualitative research that adequately captures HSD/hEDS patient experiences of surgery. Further robust, long-term studies are needed to properly inform surgical management and improve patient outcomes.