Terry Rohini H, Palmer Shea T, Rimes Katharine A, Clark Carol J, Simmonds Jane V, Horwood Jeremy P
Bristol Randomised Trials Collaboration (BRTC), School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS,
Department of Allied Health Professions, University of the West of England, Blackberry Hill, Bristol BS16 1DD,
Fam Pract. 2015 Jun;32(3):354-8. doi: 10.1093/fampra/cmv026. Epub 2015 Apr 24.
Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with 'everyday' non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation.
The aim of the study was to examine patients' lived experience of JHS, their views and experiences of JHS diagnosis and management.
Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data.
Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential.
Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.
肌肉骨骼问题是寻求初级医疗保健的常见原因。有人认为，许多患有“日常”非炎性肌肉骨骼问题的人可能患有未被诊断出的关节过度活动综合征（JHS），这是一种复杂的多系统疾病。JHS的特征是关节松弛、疼痛、疲劳以及一系列其他症状。物理治疗通常是JHS的首选治疗方法，尽管诊断可能很困难。需要对JHS患者的生活经历进行调查。
本研究的目的是调查患者对JHS的生活经历、他们对JHS诊断和管理的看法及经历。
在英国四个地点召集了焦点小组，有25名先前被诊断为JHS的参与者。焦点小组进行了录音，完整转录，并使用持续比较法进行分析，以归纳得出数据的主题描述。
疼痛、疲劳、本体感觉困难和反复的损伤周期是JHS患者生活中最具挑战性的特征。参与者认为医疗专业人员以及更广泛的社会对JHS缺乏认识，并描述了诊断和获得适当医疗服务的过程往往缓慢且复杂。患者和医疗专业人员的教育被认为至关重要。
及时诊断、提高认识以及接触了解JHS的医疗专业人员可能对缓解症状和帮助患者自我管理病情特别有帮助。物理治疗师和其他医疗专业人员应接受培训，为患有这种疾病的人提供生物心理社会支持。
