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

Abstract

Purpose: 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.

Materials and methods: 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.

Results: 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.

Conclusions: 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.