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

The 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). We 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. A 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. This 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.