The prevalence of hypermobile Ehlers-Danlos syndrome at a gender-affirming primary care clinic.

IF 2.3 Q2 MEDICINE, GENERAL & INTERNAL
SAGE Open Medicine Pub Date : 2025-01-22 eCollection Date: 2025-01-01 DOI:10.1177/20503121251315021
Theo Stein, Shannon Collins, Joshua St Louis
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Abstract

Objective: This study utilized a sample of trangender, nonbinary, and gender-diverse (TGD) patients to build on emerging literature that suggests that hypermobile Ehlers-Danlos syndrome may be overrepresented in TGD populations. The objective of this retrospective chart review was to determine the prevalence of hypermobile Ehlers-Danlos syndrome syndrome at a gender-affirming primary care clinic.

Methods: A retrospective chart review of medical records was conducted with records between May 2021 and June 2024. Eligible participants were active patients at the gender-affirming primary care clinic, who were over the age of 16, were TGD, and had a diagnosis of hypermobile Ehlers-Danlos syndrome. Of 2180 patients over the age of 16, 59 patients met the criteria. The primary outcome was the prevalence of hypermobile Ehlers-Danlos syndrome in the sample, summarized by frequency and percentage. Secondary outcomes were the prevalence of associated clinical features within the sample of TGD patients with hypermobile Ehlers-Danlos syndrome.

Results: The prevalence of hypermobile Ehlers-Danlos syndrome syndrome was 2.7%. Within the sample of patients with hypermobile Ehlers-Danlos syndrome, 81.4% were found to have diagnoses of anxiety, depression, or attention deficit hyperactivity disorder, 50.8% had a history of migraines or dysautonomia, 39.0% had a history of gastroesophageal reflux disease, irritable bowel syndrome, nausea, diarrhea, or gastroparesis, 16.9% had history of mast cell activation disorder, 32.2% had postural orthostatic tachycardia syndrome, 30.5% had dysmenorrhea, 83.1% reported chronic pain, and 44.1% reported chronic fatigue.

Conclusions: We found that 2.7% of the 2180 patients had a diagnosis of hypermobile Ehlers-Danlos syndrome syndrome. The sample had notably high rates of medical comorbidities as well as anxiety, depression, or attention deficit hyperactivity disorder, consistent with emerging research. The results support the intersecting psychological and healthcare vulnerabilities of TGD patients with hypermobile Ehlers-Danlos syndrome. Further research in this intersection could support mitigation of health care disparities that affect TGD patients with hypermobile Ehlers-Danlos syndrome syndrome.

在性别确认初级保健诊所的多动埃勒斯-丹洛斯综合征的流行。
目的:本研究利用跨性别、非二元和性别多样化(TGD)患者的样本,建立在新兴文献的基础上,这些文献表明,过度移动的埃勒-丹洛斯综合征可能在TGD人群中被过度代表。本回顾性图表回顾的目的是确定在性别确认初级保健诊所的多动埃勒斯-丹洛斯综合征的患病率。方法:对我院2021年5月~ 2024年6月的病历资料进行回顾性图表分析。符合条件的参与者是在性别确认初级保健诊所活跃的患者,他们年龄超过16岁,是TGD,并且被诊断为运动过度的埃勒斯-丹洛斯综合征。在2180名16岁以上的患者中,有59名患者符合标准。主要结局是样本中移动过度的埃勒-丹洛斯综合征的患病率,通过频率和百分比进行总结。次要结局是TGD伴超活动型埃勒-丹洛斯综合征患者样本中相关临床特征的流行程度。结果:多动型Ehlers-Danlos综合征的患病率为2.7%。在多动性埃勒-丹洛斯综合征患者样本中,81.4%被诊断为焦虑、抑郁或注意缺陷多动障碍,50.8%有偏头痛或自主神经异常病史,39.0%有胃食管反流病、肠易激综合征、恶心、腹泻或胃轻瘫病史,16.9%有肥大细胞活化障碍病史,32.2%有体位性心动过速综合征,30.5%有痛经,16.9%有胃肥大细胞活化障碍,32.2%有体位性心动过速综合征。83.1%报告慢性疼痛,44.1%报告慢性疲劳。结论:我们发现2180例患者中有2.7%被诊断为运动过度的Ehlers-Danlos综合征。与新兴研究一致,该样本的医疗合并症以及焦虑、抑郁或注意力缺陷多动障碍的发生率明显很高。这些结果支持了TGD患者与超活动型Ehlers-Danlos综合征的交叉心理和保健脆弱性。在这一交叉领域的进一步研究可以支持缓解影响TGD患者伴超移动Ehlers-Danlos综合征的医疗保健差异。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
SAGE Open Medicine
SAGE Open Medicine MEDICINE, GENERAL & INTERNAL-
CiteScore
3.50
自引率
4.30%
发文量
289
审稿时长
12 weeks
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