2026-06-15 エディンバラ大学
英国のThe University of Edinburghの研究チームは、関節過可動性症候群や過可動型エーラス・ダンロス症候群（hEDS）の患者が、症状出現から正式診断まで平均で約20年を要していることを明らかにした。研究では患者データと診療記録を分析し、多くの患者が幼少期から関節痛、疲労、脱臼、消化器症状など多様な症状を経験しているにもかかわらず、疾患の認知不足や症状の多様性のため診断が大幅に遅れていることが判明した。
また、診断確定までの過程で複数の診療科を受診し、誤診や原因不明と判断されるケースも少なくなかった。診断の遅れは、適切な治療や生活指導を受ける機会の喪失だけでなく、患者の身体的・精神的負担の増大にもつながっていた。研究者らは、医療従事者の認知向上や診断基準の普及、早期スクリーニング体制の整備が重要であると指摘している。
本研究は、過可動性関連疾患が想定以上に見逃されている実態を示すとともに、早期診断による患者の生活の質（QOL）向上や医療資源の効率的活用の必要性を示した。診断遅延の解消は、慢性疼痛や機能障害の軽減にもつながる重要な課題である。
＜関連情報＞
- https://www.ed.ac.uk/news/study-reveals-two-decade-delay-in-hypermobility-diagnoses
- https://www.tandfonline.com/doi/full/10.1080/09638288.2026.2646723
英国における過可動性エーラース・ダンロス症候群および過可動性スペクトラム障害の患者体験：全国横断調査の結果 The lived experience of hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders in the United Kingdom: findings from a national cross-sectional survey
Kathryn M. Berg & Dervil M. Dockrell
Disability and Rehabilitation Published:03 Apr 202
DOI:https://doi.org/10.1080/09638288.2026.2646723
Abstract
Purpose
This study explored the lived experiences of individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) in the United Kingdom, focusing on diagnosis, access to care, and impact on daily life.
Materials and Methods
A cross-sectional, mixed-methods online survey was co-developed with patients and clinicians and disseminated via Ehlers-Danlos Support UK social media between September 2023 and January 2024.
Results
A total of 2002 valid responses were received. Respondents were predominantly female (90.9%). The mean diagnostic delay was 19.0–21.7 years. Regional differences and heavy reliance on private healthcare were noted. Common symptoms included chronic pain (83.9%), joint subluxations (73.8%), and gastrointestinal manifestations (66.3%), and we observed high rates of neurodivergence. High rates of unemployment (45.6%), disrupted education (55.9%), and benefit dependence (47.9%) were also reported.
Conclusions
Our findings highlight the urgent need for equitable, multidisciplinary care pathways co-designed with patients to reduce diagnostic delay, improve care coordination, and address the wide-ranging impacts of hEDS/HSD.
Implications for rehabilitation
- Individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) commonly experience chronic pain, fatigue, and multisystem symptoms that significantly impair daily functioning and quality of life.
- Access to coordinated, multidisciplinary management (including physiotherapy, occupational therapy, and psychological support) is currently limited and often fragmented.
- Supported self-management resources should be neurodivergence-informed and co-designed with patients to address both physical and psychosocial challenges in an accessible manner.
