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埃勒斯-当洛斯综合征:当前治疗选择的分析。

Ehlers-Danlos Syndrome: An Analysis of the Current Treatment Options.

机构信息

H. Ben Taub Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, TX.

出版信息

Pain Physician. 2020 Jul;23(4):429-438.

PMID:32709178
Abstract

BACKGROUND

Ehlers-Danlos syndrome (EDS) is a multifaceted disease that can present with a variety of types of pain. Unfortunately, both the mechanisms and treatments for pain are poorly understood. The proposed treatments for the various musculoskeletal pain syndromes in EDS have had variable success, and it becomes much more imperative to better define and evaluate the current treatment modalities in treating this debilitating disease.

OBJECTIVES

The purpose of this study was to investigate the currently available treatment modalities for patients with EDS and their efficacies in pain and symptom relief.

STUDY DESIGN

Retrospective cohort study.

SETTING

Institutional physical medicine and rehabilitation primary care clinic.

METHODS

All patients were seen between January 2015 and April 2019, in which 98 patients with EDS were identified through retrospective chart review. Institutional review board approval was obtained, and all patients provided written consent to be included in the study. We reviewed various treatment modalities, including complimentary/alternative treatments, opioids/opioid-like medications, nonsteroidal antiinflammatory drugs, physical therapy, occupational therapy, muscle relaxants, neuropathic modulators, steroids, surgery/procedures, and acetaminophen. Treatment methods were extracted from individual patient charts, and efficacy was grouped into 3 categories: improvement, no effect, or worsened symptoms.

RESULTS

The most common treatments used were complimentary/alternative treatments (n = 88). Occupational therapy and bracing were the most effective options with 70% of patients reporting improvement. Neuropathic modulators were the least well tolerated with 47% of patients reporting adverse effects.

LIMITATIONS

Men were a small percentage of the study. Patients were not randomized, and pain score reporting was subjective. Patient data were extracted from a single practice setting. Timing and symptom onset were not measured.

CONCLUSIONS

There is a relative paucity of published literature regarding the various treatment methods for EDS. Although our study is able to identify positive and negative trends with certain modalities, it is vital to understand that EDS is not a uniform diagnosis among patients, and that a combination of several different treatments usually is needed for optimal symptom control. Further research and investigation are necessary to develop a comprehensive treatment database for this complex condition.

KEY WORDS

Ehlers-Danlos syndrome, pain, hypermobility, arthralgia, subluxation, genetic, physical therapy, interventional pain.

摘要

背景

埃勒斯-当洛斯综合征(EDS)是一种多方面的疾病,可表现为多种类型的疼痛。不幸的是,疼痛的机制和治疗方法都知之甚少。各种 EDS 肌肉骨骼疼痛综合征的拟议治疗方法的成功率各不相同,因此更有必要更好地定义和评估目前治疗这种使人衰弱的疾病的方法。

目的

本研究旨在调查目前用于 EDS 患者的治疗方法及其在缓解疼痛和症状方面的疗效。

研究设计

回顾性队列研究。

设置

机构物理医学和康复初级保健诊所。

方法

所有患者均于 2015 年 1 月至 2019 年 4 月就诊,通过回顾性病历回顾确定了 98 例 EDS 患者。获得机构审查委员会的批准,所有患者均书面同意参与研究。我们回顾了各种治疗方法,包括补充/替代疗法、阿片类药物/类阿片药物、非甾体抗炎药、物理治疗、职业治疗、肌肉松弛剂、神经调节剂、类固醇、手术/程序和对乙酰氨基酚。治疗方法从个体患者的图表中提取,疗效分为 3 类:改善、无效果或症状恶化。

结果

最常用的治疗方法是补充/替代疗法(n = 88)。职业治疗和支架是最有效的选择,70%的患者报告症状改善。神经调节剂的耐受性最差,47%的患者报告不良反应。

局限性

男性在研究中占很小的比例。患者未随机分组,疼痛评分报告是主观的。患者数据从单一实践环境中提取。治疗时机和症状发作时间未测量。

结论

关于 EDS 的各种治疗方法,文献相对较少。尽管我们的研究能够确定某些治疗方法的积极和消极趋势,但必须了解的是,EDS 在患者中并不是一个统一的诊断,通常需要几种不同的治疗方法相结合才能获得最佳的症状控制。需要进一步的研究和调查,以开发针对这种复杂疾病的综合治疗数据库。

关键词

埃勒斯-当洛斯综合征、疼痛、高弹性、关节痛、半脱位、遗传、物理治疗、介入性疼痛。

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