Evidence map›Paper›PMID 41634809›Full record

ArticleOrphanet journal of rare diseases2026

Prevalence and management of mental health comorbidities in a German cohort of patients with Ehlers-Danlos syndromes and a generalized hypermobility spectrum disorder.

Michaela Henning, Marie Hock, Arim Shukri, Vanessa Löw, Nikolaus Kernich, Jonas Rauterberg, Henning Klapproth, Iliana Tantcheva-Poór

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Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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3 · Its place in the literature

Who cites it

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4 · The record

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5 · Who and what money

Authors and funding

8 authors.

Michaela HenningDepartment of Psychosomatics and Psychotherapy, University Hospital Cologne, University of Cologne, Kerpener Strasse 62, 50937, Cologne, Germany. michaela.henning@uk-koeln.de.ORCID http://orcid.org/0000-0002-1031-5140
Marie HockDepartment of Dermatology and Venereology, University Hospital Cologne, University of Cologne, Kerpener Strasse 62, 50937, Cologne, Germany.
Arim ShukriInstitute of Health Economics and Clinical Epidemiology, University Hospital Cologne, Kerpener Strasse 62, 50937, Cologne, Germany.
Vanessa LöwDepartment of Anesthesiology and Intensive Care Medicine, University Hospital of Cologne, Kerpener Strasse 62, 50937, Cologne, Germany.
Nikolaus KernichDepartment of Orthopedic and Trauma Surgery, University Hospital of Cologne, University of Cologne, Kerpener Strasse 62, 50937, Cologne, Germany.
Jonas RauterbergDepartment of Dermatology and Venereology, University Hospital Cologne, University of Cologne, Kerpener Strasse 62, 50937, Cologne, Germany.
Henning KlapprothDepartment of Dermatology and Venereology, University Hospital Cologne, University of Cologne, Kerpener Strasse 62, 50937, Cologne, Germany.
Iliana Tantcheva-PoórDepartment of Dermatology and Venereology, University Hospital Cologne, University of Cologne, Kerpener Strasse 62, 50937, Cologne, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveThe objective of this study was to examine mental health comorbidities and their management in individuals living in Germany with generalized symptomatic hypermobility, including Ehlers-Danlos Syndromes (EDS) and generalized hypermobility spectrum disorder (G-HSD).

methodsWe conducted a descriptive cross-sectional study at the EDS outpatient service, University Hospital of Cologne, Germany. A standardized self-report form was sent to all adults who were diagnosed with hypermobile EDS (hEDS), classical EDS (cEDS), classical-like EDS (clEDS) or G-HSD from December 2021 until May 2023. Participants completed an ad-hoc standardized, pseudonymized paper-based self- report form developed ad hoc for this study as along with the following validated instruments: the PHQ-9 (Personal Health Questionnaire with 9 items) and DASS (Depression Anxiety Stress Scales) regarding depression, stress, and anxiety, and the corresponding modules of the PHQ-D (Personal Health Questionnaire, German version) regarding eating disorders and alcohol abuse.

resultsA total of 132 participants were included, of whom 99 completed the questionnaire. Overall, 85% of respondents reported experiencing a moderate to severe mental burden due to EDS/G-HSD. Self-reported lifetime prevalence of mental health diagnoses was 58.6%, with depression, posttraumatic stress disorder (PTSD) and anxiety disorders being the most common ones. 27.3% indicated at least two mental health disorders. The prevalence of symptom severity scores above the clinical cut-off of depression was 60.2% (according to the PHQ-9) and that of anxiety disorders was 45.4% (according to the DASS). Despite 68.7% of participants having received psychotherapy, our findings suggest that mental health conditions were probably underdiagnosed and likely undertreated in our patients.

conclusionThis is the first study examining mental health comorbidities in patients with EDS/G-HSD living in Germany. It adds to the growing body of evidence indicating that mental health disorders, particularly depression and anxiety, are highly prevalent in EDS, regardless of the subtype. Our survey also provides increased prevalence data for PTSD and eating disorders as well as data on the use of psychotherapy and antidepressants in EDS/G-HSD. There is a critical need for improved diagnostic pathways and treatment strategies that prioritize a multidisciplinary biopsychosocial approach in the care of these patients.

Indexed as

Ehlers-Danlos SyndromeJoint InstabilityAdultComorbidityCross-Sectional StudiesFemaleGermanyHumansMaleMental HealthMiddle AgedPrevalenceSurveys and QuestionnairesAntidepressantsAnxietyDepressionEating disordersEhlers-Danlos syndromesGeneralized hypermobilityHypermobility spectrum disorderMental health disordersPosttraumatic stress disorderPsychotherapy

Identifiers

PMID41634809
PMCPMC12958675

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LicenceCC BY
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.