The Impact of living with Ehlers-Danlos Syndrome on health-related quality of life: A systematic review following the 2017 international EDS classification

Foster, Joanna ORCID: https://orcid.org/0009-0005-9012-6612, Walklet, Elaine and Stephens-Lewis, Danielle ORCID: https://orcid.org/0000-0001-6694-9954 (2025) The Impact of living with Ehlers-Danlos Syndrome on health-related quality of life: A systematic review following the 2017 international EDS classification. Rare, 3. p. 100107. doi:10.1016/j.rare.2025.100107 (In Press)

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Abstract

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.

Item Type:	Article
Article Type:	Article
Uncontrolled Keywords:	Ehlers-Danlos Syndrome; Health-Related Quality of Life; Systematic Review; HRQoL instruments; Condition management
Subjects:	R Medicine > RA Public aspects of medicine > RA645.A-Z Individual diseases or groups of diseases, A-Z B Philosophy. Psychology. Religion > BF Psychology R Medicine > R Medicine (General)
Divisions:	Schools and Research Institutes > School of Education, Health and Sciences
Depositing User:	Charlotte Crutchlow
Date Deposited:	23 Sep 2025 11:43
Last Modified:	24 Sep 2025 15:15
URI:	https://eprints.glos.ac.uk/id/eprint/15341

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