Integrative medicine for hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS): a feasibility study.

IF 2 4区 医学 Q1 REHABILITATION Disability and Rehabilitation Pub Date : 2024-12-01 Epub Date: 2024-02-14 DOI:10.1080/09638288.2024.2314713
Sara E Guedry, Blake O Langley, Kerry Schaefer, Douglas A Hanes
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Abstract

Purpose: Hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS) are multisystem conditions marked by dysfunctional connective tissue. This feasibility study evaluated a 9-week integrative medicine program in this population.

Methods: Using a single-arm study design, adults with HSD or EDS were given recommendations for an anti-inflammatory Mediterranean diet and self-management with additional behavioral and psychosocial support. Preliminary data on feasibility based on recruitment and retention, adherence to the diet, mobile app tracking, changes to perceived well-being via health outcomes, and satisfaction with care were obtained.

Results: Thirteen participants were enrolled within a 4-month timeframe. Eight participants completed the study. Three participants met dietary tracking requirement in at least 4 of 8 intervention weeks and met the macronutrient requirements in at least half of the weeks tracked. No decreases in VAS pain scores after 5 and 9 weeks were noted; however, 62.5% (n = 5) of participants had decreased pain at 9 weeks, compared to baseline. There were significant improvements (p<.05) in six of twelve measurements of satisfaction with care at the end of the intervention.

Conclusion: This study provides a foundation for future research on patient experience and introduces a novel treatment paradigm focused on nutrition and self-management.

Trial Registration: National Institutes of Health clinicaltrials.gov; identifier: NCT04734041.

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针对活动过多症(HSD)和埃勒斯-丹洛斯综合征(EDS)的整合医学:一项可行性研究。
目的:多动症谱系障碍(HSD)和埃勒斯-丹洛斯综合征(EDS)是以结缔组织功能障碍为特征的多系统疾病。这项可行性研究评估了在这一人群中开展的为期 9 周的综合医学项目:方法:采用单臂研究设计,向患有 HSD 或 EDS 的成人推荐抗炎性地中海饮食和自我管理,并提供额外的行为和社会心理支持。根据招募和保留、坚持饮食、手机应用跟踪、通过健康结果感知幸福感的变化以及对护理的满意度,获得了有关可行性的初步数据:结果:13 名参与者在 4 个月的时间内完成了注册。八名参与者完成了研究。在 8 个干预周中,有 3 名参与者至少有 4 周达到了饮食追踪要求,至少有一半的追踪周达到了宏量营养素要求。5周和9周后,VAS疼痛评分没有下降;但是,与基线相比,62.5%(n = 5)的参与者在9周时疼痛有所减轻。与基线相比,有明显改善(p 结论:该研究为今后的研究奠定了基础:这项研究为今后有关患者体验的研究奠定了基础,并引入了一种以营养和自我管理为重点的新型治疗模式:试验注册:美国国立卫生研究院 clinicaltrials.gov;标识符:NCT04734041:NCT04734041.对康复的意义生活方式和饮食干预在多动障碍谱系障碍(HSD)和埃勒斯-丹洛斯障碍(EDS)人群中相对安全且耐受性良好。我们为期9周的综合医学项目的参与者积极参与病情的自我管理,并在饮食和追踪要求方面表现出良好的依从性。通过移动应用程序进行饮食跟踪可能有助于提高自我效能和坚持饮食改变。症状跟踪可能是患者跟踪其健康变化的一种有效方法,并能为从事疾病管理的医疗专业人员提供有价值的信息。
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来源期刊
Disability and Rehabilitation
Disability and Rehabilitation 医学-康复医学
CiteScore
5.00
自引率
9.10%
发文量
415
审稿时长
3-6 weeks
期刊介绍: Disability and Rehabilitation along with Disability and Rehabilitation: Assistive Technology are international multidisciplinary journals which seek to encourage a better understanding of all aspects of disability and to promote rehabilitation science, practice and policy aspects of the rehabilitation process.
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