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154例关节过度活动型埃勒斯-当洛综合征患者的自我报告人口统计学数据。

SELF-REPORTED DEMOGRAPHICS OF 154 HYPERMOBILE EHLERS-DANLOS SYNDROME PATIENTS.

作者信息

Ploeg Allegra N, Courseault Jacques, Cheng W Susan

出版信息

Am J Phys Med Rehabil. 2025 Apr 23. doi: 10.1097/PHM.0000000000002766.

Abstract

Demographic data for patients with Hypermobile Ehlers-Danlos Syndrome (hEDS) has not been well established. hEDS patients often present with a constellation of symptoms; it is important to update clinical criteria for diagnosis and provide a framework for common co-morbidities. The primary objective of this study was to identify the prevalence of co-morbidities in hEDS patients to allow clinicians to better identify patients and their most common symptoms. The goal is to use this information to augment diagnostic and clinical demographic data to more accurately represent hEDS patients. This retrospective chart review utilized patient intake forms from 154 patients diagnosed with Hypermobile Ehlers-Danlos Syndrome in a clinic. Patient intake forms included responses to questions about the presence of various current and previous conditions. Our study revealed numerous co-morbidities with increased prevalence that differed from the current diagnostic criteria including Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, anxiety, depression, Temporomandibular Joint Syndrome, headaches, and Gastroesophageal Reflux Disease. These findings will help inform clinicians of prevalent co-morbidities among hEDS patients and encourage further evaluation for screening and diagnosis. Hypermobile Ehlers-Danlos Syndrome patients presented with a wide range of co-morbidities not listed on current clinical criteria. Future studies are warranted across diverse and larger patient populations and beyond self-reported data.

摘要

关于关节过度活动型埃勒斯-当洛综合征(hEDS)患者的人口统计学数据尚未得到充分确立。hEDS患者常表现出一系列症状;更新诊断的临床标准并为常见的合并症提供一个框架很重要。本研究的主要目的是确定hEDS患者中合并症的患病率,以便临床医生能更好地识别患者及其最常见的症状。目标是利用这些信息来扩充诊断和临床人口统计学数据,以更准确地呈现hEDS患者的情况。这项回顾性病历审查使用了一家诊所中154名被诊断为关节过度活动型埃勒斯-当洛综合征患者的患者入院表格。患者入院表格包括对有关各种当前和既往病症存在情况问题的回答。我们的研究揭示了许多患病率增加的合并症,这些合并症与当前的诊断标准不同,包括体位性直立性心动过速综合征、肥大细胞活化综合征、焦虑症、抑郁症、颞下颌关节综合征、头痛和胃食管反流病。这些发现将有助于临床医生了解hEDS患者中普遍存在的合并症,并鼓励进一步进行筛查和诊断评估。关节过度活动型埃勒斯-当洛综合征患者表现出一系列当前临床标准未列出的合并症。未来有必要在不同的、更大的患者群体中开展研究,且不限于自我报告的数据。

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