Understanding the issues of hypermobility spectrum disorders and hypermobile Ehlers–Danlos syndrome in primary care: a qualitative integrative review

Hypermobility spectrum disorders (HSDs) and hypermobile Ehlers–Danlos syndrome (hEDS) are disorders characterised by joint laxity, pain, and fatigue, causing multi-system complications and significant burden. Primary care is essential in supporting HSD/hEDS patients, and understanding challenges in this setting is key. This integrative review aims to understand and analyse issues that exist in primary care for clinicians and HSD/hEDS patients. Embase, Medline, Health Management Information Consortium, Social Policy & Practice, PsycINFO, Cochrane, and CINAHL databases were searched in October 2024 and qualitative or mixed-method studies were included. Thematic analysis and critical appraisal were performed on eight studies. Three themes were identified as common issues for patients and clinicians: (1) structural barriers, (2) societal barriers, and (3) consultation barriers to care. Uncoordinated services, inadequate training, and stigma were common sub-themes and these barriers existed at multiple levels. Few published studies explored the direct experiences of patients and clinicians in primary care and data varied in quality. Future qualitative studies could explore primary care physicians’ knowledge and attitudes towards HSD/hEDS in this setting to inform the organisation of appropriate services and education strategies. This could contribute to knowledge and bias reduction, improving patient outcomes in practice. Barriers to treatment and rehabilitation for hypermobility spectrum disorders and hypermobile Ehlers–Danlos syndrome in primary care exist at structural levels through limited education about the conditions and lack of clinical biomarkers available to support diagnosis.Stigma and bias perpetuated poor outcomes by being barriers to accessing care as patients and families may disassociate from health care services.Standardised guidelines for diagnosis are needed, with standardised practices for referring patients to multidisciplinary support.Education should be given during general practitioner training to correctly identify characteristic symptoms and perform diagnosis, and to understand appropriate management strategies for these patients. Barriers to treatment and rehabilitation for hypermobility spectrum disorders and hypermobile Ehlers–Danlos syndrome in primary care exist at structural levels through limited education about the conditions and lack of clinical biomarkers available to support diagnosis. Stigma and bias perpetuated poor outcomes by being barriers to accessing care as patients and families may disassociate from health care services. Standardised guidelines for diagnosis are needed, with standardised practices for referring patients to multidisciplinary support. Education should be given during general practitioner training to correctly identify characteristic symptoms and perform diagnosis, and to understand appropriate management strategies for these patients.