{"title":"ehers - danlos综合征对健康相关生活质量的影响：2017年国际EDS分类的系统回顾","authors":"Joanna Foster , Elaine Walklet , Danielle Stephens-Lewis","doi":"10.1016/j.rare.2025.100107","DOIUrl":null,"url":null,"abstract":"<div><h3>Objective</h3><div>The Ehlers-Danlos Syndromes (EDS) are a group of multi-systemic, chronic conditions with complex symptomology. This systematic review aimed to synthesise what is known about the impact of EDS on Health-Related Quality of Life (HRQoL), and associated moderating factors, following a change in diagnostic criteria.</div></div><div><h3>Methods</h3><div>Fifteen databases, grey literature and reference lists were systematically searched. A systematic review was performed following the Preferred Reporting Items for Systematic Reviews and guidelines for narrative synthesis. Findings were grouped according to outcomes, moderating factors, and measurement instrument. A further synthesis aligned outcomes with domains of HRQoL. Risk of bias was addressed using the Effective Public Health Practice Project assessment tool.</div></div><div><h3>Results</h3><div>Eight quantitative studies met eligibility criteria. Findings indicate substantial impact due to symptoms and functional status. However, how HRQoL is measured potentially introduces bias such that other factors are overlooked.</div></div><div><h3>Conclusion</h3><div>This review suggests key aspects of how HRQoL is experienced remain underexplored and underreported. Issues of methodological rigour raise further concerns around the usefulness of study findings. Further research is required to clarify how aspects of HRQoL are prioritised and experienced and how they can best be measured, to improve management of this debilitating condition.</div><div><strong>PROSPERO registration number</strong> CRD42022318979</div></div>","PeriodicalId":101058,"journal":{"name":"Rare","volume":"3 ","pages":"Article 100107"},"PeriodicalIF":0.0000,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The Impact of living with Ehlers-Danlos Syndrome on health-related quality of life: A systematic review following the 2017 international EDS classification\",\"authors\":\"Joanna Foster , Elaine Walklet , Danielle Stephens-Lewis\",\"doi\":\"10.1016/j.rare.2025.100107\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Objective</h3><div>The Ehlers-Danlos Syndromes (EDS) are a group of multi-systemic, chronic conditions with complex symptomology. This systematic review aimed to synthesise what is known about the impact of EDS on Health-Related Quality of Life (HRQoL), and associated moderating factors, following a change in diagnostic criteria.</div></div><div><h3>Methods</h3><div>Fifteen databases, grey literature and reference lists were systematically searched. A systematic review was performed following the Preferred Reporting Items for Systematic Reviews and guidelines for narrative synthesis. Findings were grouped according to outcomes, moderating factors, and measurement instrument. A further synthesis aligned outcomes with domains of HRQoL. Risk of bias was addressed using the Effective Public Health Practice Project assessment tool.</div></div><div><h3>Results</h3><div>Eight quantitative studies met eligibility criteria. Findings indicate substantial impact due to symptoms and functional status. However, how HRQoL is measured potentially introduces bias such that other factors are overlooked.</div></div><div><h3>Conclusion</h3><div>This review suggests key aspects of how HRQoL is experienced remain underexplored and underreported. Issues of methodological rigour raise further concerns around the usefulness of study findings. Further research is required to clarify how aspects of HRQoL are prioritised and experienced and how they can best be measured, to improve management of this debilitating condition.</div><div><strong>PROSPERO registration number</strong> CRD42022318979</div></div>\",\"PeriodicalId\":101058,\"journal\":{\"name\":\"Rare\",\"volume\":\"3 \",\"pages\":\"Article 100107\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2025-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Rare\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S2950008725000511\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Rare","FirstCategoryId":"1085","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S2950008725000511","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
The Impact of living with Ehlers-Danlos Syndrome on health-related quality of life: A systematic review following the 2017 international EDS classification
Objective
The Ehlers-Danlos Syndromes (EDS) are a group of multi-systemic, chronic conditions with complex symptomology. This systematic review aimed to synthesise what is known about the impact of EDS on Health-Related Quality of Life (HRQoL), and associated moderating factors, following a change in diagnostic criteria.
Methods
Fifteen databases, grey literature and reference lists were systematically searched. A systematic review was performed following the Preferred Reporting Items for Systematic Reviews and guidelines for narrative synthesis. Findings were grouped according to outcomes, moderating factors, and measurement instrument. A further synthesis aligned outcomes with domains of HRQoL. Risk of bias was addressed using the Effective Public Health Practice Project assessment tool.
Results
Eight quantitative studies met eligibility criteria. Findings indicate substantial impact due to symptoms and functional status. However, how HRQoL is measured potentially introduces bias such that other factors are overlooked.
Conclusion
This review suggests key aspects of how HRQoL is experienced remain underexplored and underreported. Issues of methodological rigour raise further concerns around the usefulness of study findings. Further research is required to clarify how aspects of HRQoL are prioritised and experienced and how they can best be measured, to improve management of this debilitating condition.
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