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Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers-Danlos syndrome hypermobility type: a qualitative interview study.理解关节过度活动综合征和埃勒斯-当洛斯综合征过度活动型的心理社会影响:一项定性访谈研究。
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探索成人多动障碍谱及埃勒斯-当洛斯综合征的生物心理社会影响:一项范围综述方案。

Exploring the biopsychosocial impact of hypermobility spectrum disorders and Ehlers-Danlos syndrome in an adult population: a protocol for a scoping review.

机构信息

South Tees Hospitals NHS Foundation Trust, Middlesbrough, UK.

The Mary Kinross Trust & RCS Chair, Department of Health Sciences & Hull York Medical School, University of York, York, UK.

出版信息

Syst Rev. 2024 Jan 12;13(1):27. doi: 10.1186/s13643-024-02452-0.

DOI:10.1186/s13643-024-02452-0
PMID:38217042
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10785370/
Abstract

BACKGROUND

Conditions such as hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndrome (EDS) are most often diagnosed when an individual has joint flexibility beyond the normal physiological limits. Additional characteristics and symptoms include pain and fatigue with individuals also being more likely to report feelings of anxiety and depression. Due to the varied presentation of these conditions, there is a lack of understanding amongst the various healthcare professionals (HCPs) individuals present to, leading to delayed diagnoses and negative experiences for the individuals themselves. This scoping review therefore aims to map the known biopsychosocial impact of adults with HSD and EDS.

METHODS

The scoping review will follow the six-step framework as outlined by Arskey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) checklist. The search will be conducted using the following databases: AMED, CINAHL, Cochrane Library, Embase, MEDLINE, PsycINFO, PubMed PEDro. Full-text published articles in the English language (excluding literature and systematic reviews) with adult samples (over the age of 18 years) and a diagnosis of a HSD or EDS, published between 2012 and 2022, will be included in the review.

DISCUSSION

This review will aim to explore the existing literature for the reported biopsychosocial impact of adults with a HSD or EDS. It will also aim to further acknowledge the gaps in understanding of the condition, how the condition and the impact of the condition is being measured and what HCPs are involved in supporting such individuals. These gaps will be used to inform a future systematic review. It is the overall goal to increase the knowledge of HCPs and the quality of life of adults living with a joint hypermobility condition.

摘要

背景

当个体的关节灵活性超出正常生理范围时,通常会诊断出过度活动谱障碍(HSD)和埃勒斯-当洛斯综合征(EDS)等疾病。其他特征和症状包括疼痛和疲劳,个体也更有可能报告焦虑和抑郁的感觉。由于这些病症的表现形式各不相同,因此,个体就诊的各种医疗保健专业人员(HCPs)对这些病症缺乏了解,导致诊断延迟和个体的负面体验。因此,本范围综述旨在绘制 HSD 和 EDS 成人患者的已知生物心理社会影响图谱。

方法

本范围综述将遵循 Arskey 和 O'Malley 提出的六步框架以及系统评价和荟萃分析的首选报告项目范围综述(PRISMA-ScR)清单。将使用以下数据库进行搜索:AMED、CINAHL、Cochrane 图书馆、Embase、MEDLINE、PsycINFO、PubMed PEDro。纳入综述的文献为发表于 2012 年至 2022 年期间的全文文章,语言为英文(不包括文献和系统评价),研究对象为成年患者(年龄超过 18 岁),并被诊断为 HSD 或 EDS。

讨论

本综述旨在探索 HSD 或 EDS 成人患者的现有文献,以了解其报告的生物心理社会影响。它还旨在进一步承认对该病症的理解存在差距,该病症及其影响的测量方式,以及参与支持此类患者的 HCPs。这些差距将用于为未来的系统综述提供信息。总体目标是提高 HCPs 的知识水平和患有关节过度活动病症的成年人的生活质量。