Sara E Guedry, Blake O Langley, Kerry Schaefer, Douglas A Hanes
{"title":"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。","authors":"Sara E Guedry, Blake O Langley, Kerry Schaefer, Douglas A Hanes","doi":"10.1080/09638288.2024.2314713","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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% (<i>n</i> = 5) of participants had decreased pain at 9 weeks, compared to baseline. There were significant improvements (<i>p</i><.05) in six of twelve measurements of satisfaction with care at the end of the intervention.</p><p><strong>Conclusion: </strong>This study provides a foundation for future research on patient experience and introduces a novel treatment paradigm focused on nutrition and self-management.</p><p><p>Trial Registration: National Institutes of Health clinicaltrials.gov; identifier: NCT04734041.</p>","PeriodicalId":50575,"journal":{"name":"Disability and Rehabilitation","volume":" ","pages":"5854-5867"},"PeriodicalIF":2.1000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Integrative medicine for hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS): a feasibility study.\",\"authors\":\"Sara E Guedry, Blake O Langley, Kerry Schaefer, Douglas A Hanes\",\"doi\":\"10.1080/09638288.2024.2314713\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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% (<i>n</i> = 5) of participants had decreased pain at 9 weeks, compared to baseline. There were significant improvements (<i>p</i><.05) in six of twelve measurements of satisfaction with care at the end of the intervention.</p><p><strong>Conclusion: </strong>This study provides a foundation for future research on patient experience and introduces a novel treatment paradigm focused on nutrition and self-management.</p><p><p>Trial Registration: National Institutes of Health clinicaltrials.gov; identifier: NCT04734041.</p>\",\"PeriodicalId\":50575,\"journal\":{\"name\":\"Disability and Rehabilitation\",\"volume\":\" \",\"pages\":\"5854-5867\"},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2024-12-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Disability and Rehabilitation\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/09638288.2024.2314713\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/2/14 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"REHABILITATION\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Disability and Rehabilitation","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/09638288.2024.2314713","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/2/14 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"REHABILITATION","Score":null,"Total":0}
Integrative medicine for hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS): a feasibility study.
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.
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.