Abstract：
Patients with joint-hypermobility and joint-hypermobility spectrum disorders (HSD), including hypermobile Ehlers-Danlos Syndromes (EDS) present numerous co-morbid concerns, and multidisciplinary care has been recommended. The complexity of these patient\'s needs and increased demand for medical services have resulted in long delays for diagnosis and treatment and exhausted extant clinical resources. Strategies must be considered to ensure patient needs are met in a timely fashion. This opinion piece discusses several potential models of care for joint-hypermobility disorders, several ways in which primary providers can be involved, and argues that primary providers should be an essential and integrated part of the management of these patients, in collaboration with multidisciplinary teams and pediatric subspecialists. We review several strategies and educational opportunities that may better incorporate primary providers into the care and management of these patients, and we also discuss some of the limitations and barriers that need to be addressed to improve provision of care. This includes establishing primary care physicians as the medical home, providing initial diagnostic and treatment referrals while connecting patients with specialty care, and collaboration and coordination with multi-disciplinary teams for more complex needs. Several barriers exist that may hamper these efforts, including a lack of available specialty trainings for providers interested in providing care to patients with EDS and HSD, a lack of expertly derived consensus guidelines, and limited time resources in extant primary care practices. Also, primary providers should have an active voice in the future for the further consideration and development of these presented strategies.
摘要：
关节活动过度和关节活动过度谱系障碍（HSD）患者，包括超机动Ehlers-Danlos综合征(EDS)提出了许多共病问题，并建议多学科护理。这些患者需求的复杂性和对医疗服务需求的增加导致了诊断和治疗的长期延误，并耗尽了现有的临床资源。必须考虑策略，以确保及时满足患者的需求。这篇观点文章讨论了几种潜在的关节过度活动障碍护理模式，主要提供者可以参与的几种方式，并认为主要提供者应该是这些患者管理的重要组成部分，与多学科团队和儿科专家合作。我们回顾了几种策略和教育机会，可以更好地将主要提供者纳入这些患者的护理和管理，我们还讨论了改善护理提供所需解决的一些限制和障碍。这包括建立初级保健医生作为医疗之家，提供初始诊断和治疗转诊，同时将患者与专科护理联系起来，以及与多学科团队的协作和协调，以满足更复杂的需求。存在一些障碍可能会阻碍这些努力，包括对有兴趣为EDS和HSD患者提供护理的提供者缺乏可用的专业培训，缺乏专业得出的共识准则，现有初级保健实践的时间资源有限。此外，对于进一步考虑和制定这些提出的策略，主要提供者将来应该有积极的声音。
