Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire study
Open accessAbstract
BACKGROUND: Many individuals with Ehlers-Danlos Syndrome (EDS) are hypermobile, suffer from long term pain, and have complex health problems. Since these sometimes have no objective physical signs, individuals with EDS sometimes are referred for psychiatric evaluation. The aim was therefore to identify the level of anxiety and quality of life in a Swedish group of individuals with EDS. METHODS: A postal survey in 2008 was distributed to 365 members over 18 years of the Swedish National EDS Association and 250 with EDS diagnosis responded. Two questionnaires, the Hospital Anxiety and Depression Scale (HADS) and SF-36, were used. A Swedish population study was used to compare results from SF-36. Independent Student's t-test was used to compare differences between groups, possible relationships were tested using Spearman's correlation coefficient and the General Linear Model was used for regression analyses. Higher scores on HADS represent higher levels of anxiety and depression and higher scores on SF-36 represent higher quality of health. RESULTS: Of the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS. Age, tiredness and back pain was independently associated with the HAD anxiety score in a multiple regression analysis, When comparing the SF-36 scores from the EDS group and a Swedish population group, the EDS group scored significantly lower, indicating lower health-related quality of health than the general population (p < 0.001). CONCLUSIONS: In comparison with a Swedish population group, a lower health-related quality of life was found in the EDS group. Also, higher levels of anxiety and depression were detected in individuals with EDS. The importance to explore the factors behind these results and what initiatives can be taken to alleviate the situation for this group is emphasized.
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Adults with symptomatic GJH have increased overall anxiety scores.
“Adults with symptomatic GJH had increased overall scores of anxieties31,32,37,40,44,45, 46, 47,51,53 and kinesiophobia.29,30,38,44,48”
From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [31]
The Results (HADS section) report a mean anxiety score of 12.0 and probable anxiety in 74.8% of participants. But the Sample section describes adults with various EDS types, only 30% of whom were classified as having the hypermobility type; the paper does not report anxiety scores specifically for adults with symptomatic GJH or compare their scores with a control group. (LLM, conf=0.86)
Experimental — accuracy not yet measuredIn 3 studies, methodological quality was lacking.
“In 3 studies,31,49,50 methodological quality was lacking”
From Role of Anxiety in Individuals with Generalized Joint Hypermobility: A Systematic Review (2025) · cites this paper as [31]
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- Authors
- Berglund, B., Pettersson, C., Pigg, M., & Kristiansson, P.
- Affiliations
- Uppsala University (SE)
- Uppsala University Hospital (SE)
- Corresponding author
- Berglund, Britta
- ORCID
- Kristiansson, Per
- Venue
- BMC Musculoskeletal Disorders
- Published
- 2015-04-15
- Volume
- 16
- Issue
- 1
- Pages
- 89-89
- ISSN
- 1471-2474 (ISSN-L)
- PMC
- PMC4403907
- OpenAlex
- W2120029769
- Cited by
- 89
- References
- 20
- Citations by year
- 2026: 5 · 2025: 12 · 2024: 12 · 2023: 12 · 2022: 6 · 2021: 7 · 2020: 14 · 2019: 7 · 2018: 3 · 2017: 4 · 2016: 4 · 2015: 2
- FWCI
- 2.98
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- BMC Musculoskeletal Disorders (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Uppsala University Publications (Uppsala University) (submittedVersion, other-oa)
- Funders
- Karolinska Institutet
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
- Keywords
- Ehlers-Danlos syndrome, joint hypermobility, health-related quality of life, anxiety, depression, chronic pain, back pain, fatigue, psychiatric comorbidity, SF-36, Hospital Anxiety and Depression Scale
- MeSH terms
- Adult, Anxiety, Depression, Ehlers-Danlos Syndrome, Female, Health Surveys, Humans, Male, Middle Aged, Quality of Life, Surveys and Questionnaires, Sweden, Self Report
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