Health-Related Quality of Life among Adult Patients with Ehlers-Danlos Syndrome: A Systematic Review and Meta-Analysis

Tungki Pratama Umar, Reem Sayad, Muhammed Edib Mokresh, Maria Chakhide, Reem Mahjoub, Hasnaa Saad, Mark D. Griffiths, Kate Khair, Lubna Mohammed


Background: Ehlers-Danlos Syndrome (EDS) is a serious chronic condition that leads to diminished quality of life and psychological problems. The current study aimed to systematically reviewed the existing literature on EDS patients' health-related quality of life (HRQoL), calculate mean HRQoL value, and determine the association between demographical and publication-related characteristics with HRQoL. 

Methods: Four electronic databases were used to identify papers on HRQOL in adults with EDS (Scopus, Medline (by Pubmed), Epistemonikos, and Web of Science). A random-effects meta-analysis was also performed on the 36-item Short Form Survey (SF-36) measure.

Results: We contained 37 studies that fulfilled the inclusion criteria. According to the SF-36 meta-analysis, EDS patients and the general population had significant differences in all HRQoL components (p<0.01). In EDS patients, the Physical Component Summary (35.34/100) was more seriously impacted than the Mental Component Summary (45.21/100) in these patients.

Conclusion: Individuals with EDS have significantly lower HRQoL in all aspects compared to the general population, with the physical component of wellbeing being the most pronounced disparity. Future research should look into the impact of different patient characteristics, evaluate the complications of EDS and their effects on wellbeing, and develop multiple intervention strategies to improve HRQoL.


Ehlers-Danlos Syndrome; Health-related quality of life; Short Form Survey (SF-36); Meta-analysis; Systematic review.

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