Use of complementary therapies for chronic pain management in patients with reportedEhlers-Danlossyndrome or hypermobility spectrum disorders
Use of complementary therapies for chronic pain management in patients with reportedEhlers-Danlossyndrome or hypermobility spectrum disorders
复制标题
DOI：
10.1002/ajmg.a.61837
复制
发表时间：
2020-09-10
影响因子：
2
通讯作者：
Taylor, Matthew R. G.
中科院分区：
文献类型：
--
作者：
Demes, Jessica S.;McNair, Bryan;Taylor, Matthew R. G.
Ehlers-Danlos Syndrome（EDS）和相关的高动性谱系障碍（HSD）是一种使人衰弱的结缔组织疾病，其特征是突出的疼痛成分，疼痛管理的治疗选择有限。因此，许多患者尝试各种非处方治疗，包括在EDS/HSD患者人群中尚未得到充分研究的补充和替代疗法。我们通过EDS协会调查了500多名报告被诊断患有EDS或HSD的人，以确定使用了哪些补充和替代疗法，以及他们在缓解疼痛和改善生活质量方面的有效性。具体来说，我们关注的是中国传统疗法、草药和大麻的使用。70-92%的参与者使用的最常见的治疗是非甾体抗炎药，对乙酰氨基酚，阿片类药物和物理治疗。参与者认为最有效的疗法是阿片类药物，物理疗法和大麻，10-24%的使用这些疗法的人认为它们非常有帮助。在EDS/HSD患者中，患者启动的补充治疗使用率为56%。报告疼痛水平较高的EDS/HSD患者主要使用补充疗法。护理EDS/HSD患者的提供者应了解这些数据，这些数据显示主要非处方治疗的广泛使用，并准备考虑与这些患者合作，制定全面的治疗计划，以管理其慢性疼痛并发症。
Ehlers-Danlos Syndromes (EDS) and related Hypermobility Spectrum Disorders (HSD) are debilitating connective tissue disorders that feature a prominent pain component for which there are limited therapeutic options for pain management. Consequently, many patients try various non-prescribed treatments, including complementary and alternative therapies that have not been well studied in the EDS/HSD patient population. We surveyed over 500 individuals through the EDS Society who reported having been diagnosed with EDS or HSD to ascertain what complementary and alternative therapies were used and their reported effectiveness in alleviating pain and improving quality of life. Specifically, we focused on the use of traditional Chinese therapies, herbal medications, and marijuana. The most commonly reported therapies, used by 70-92% of participants, were non-steroidal anti-inflammatory drugs, acetaminophen, opioids, and physical therapy. Therapies rated by participants as most efficacious were opioids, physical therapy, and marijuana with 10-24% of those using these therapies rating them as extremely helpful. Patient-initiated complementary therapy use in EDS/HSD patients is widespread at 56%. Complementary therapies were largely utilized by EDS/HSD patients with higher reported pain levels. Providers caring for EDS/HSD patients should be aware of these data showing broad usage of predominantly non-prescribed therapies and be prepared to consider such usage in working collaboratively with these patients to develop comprehensive treatment plans to manage their chronic pain complications.