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43  Health-related quality of life in adults living with Ehlers-Danlos syndrome: a systematic review and meta-analysis involving 8251 patients
  1. Tungki Pratama Umar1,
  2. Reem Sayad2,
  3. Muhammed Edib Mokresh3,
  4. Maria Chakhide4,
  5. Reem Mahjoub Seedahmed5,
  6. Hasnaa Saad6 and
  7. Lubna Mohammed7
  1. 1Faculty of Medicine, Universitas Sriwijaya, Palembang, Indonesia
  2. 2Faculty of Medicine, Assiut University, Assiut, Egypt
  3. 3Faculty of International Medicine, University of Health Sciences, Istanbul, Turkey
  4. 4Faculty of Medicine, Aleppo University, Syria
  5. 5Faculty of Medicine, University of Khartoum, Khartoum, Sudan
  6. 6Faculty of Medicine, Tanta University, Egypt
  7. 7California Institute of Behavioral Neurosciences & Psychology, Fairfield, USA


Introduction Ehlers-Danlos Syndrome (EDS) is a serious chronic condition that leads to diminished quality of life and psychological problems. The current study systematically reviewed the existing literature on EDS patients‘ health-related quality of life (HRQoL) and evaluated the relationship between them.

Aims The purpose of this study is to perform a systematic review of the existing literature on health-related quality of life (HRQoL) in EDS patient populations and to corroborate the association among observed variables.

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.

Conclusions 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.

Impact Due to the reduced HRQoL encountered by people with EDS, assessing QoL is critical for improving care for those suffering from this lifelong disorder.

The evidence can be used to improve treatment implementation, such as using a specific instrument based on patient experience, evaluating EDS complications, and creating different non-pharmacological strategies to ameliorate difficulties related to EDS.

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