Rates of mental health concerns among individuals assessed at the GoodHope Ehlers-Danlos Syndrome Clinic

Past research has indicated that individuals with Ehlers-Danlos Syndromes (EDS) and Generalized Hypermobililty Spectrum Disorder (G-HSD) report psychological and psychiatric symptoms, particularly anxiety disorders and depressive symptoms, at much greater rates than the general population. However, these studies have been primarily conducted in small samples at European centres. We report a retrospective chart review from 1035 consecutive patients (88% female) assessed for EDS/G-HSD at the GoodHope EDS Clinic at Toronto General Hospital between June 2019 and June 2021. Prior to assessment, all patients completed self-reported mental health screening questions, the Inventory of Depressive and Anxiety Symptoms – Dysphoria scale, and the Borderline Symptom List-23. The majority of patients reported current or past anxiety or depressive symptoms (53–87%), and a substantial minority reported significant mental health concerns, including Posttraumatic Stress Disorder (4.7–34.8%), disordered eating (19%), self-harm (3-29.2%), and suicidal behaviour (7.8–18.6%). Patients did not differ by diagnostic category on self-report measures of dysphoria or borderline symptoms. Individuals with G-HSD reported higher rates of anxiety and depression in clinical interview than those diagnosed with non-hypermobile EDS, and endorsed a higher rate of having “struggled with anxiety or depression” on the mental health screening questionnaire than individuals not diagnosed with EDS/G-HSD. No other differences emerged across diagnostic groups. These findings highlight the need for psychological support for individuals with EDS or G-HSD.