Mental health concerns highly prevalent in EDS/G-HSD patients
Depression, anxiety among issues noted by patients and their doctors
Mental health concerns, including depression and anxiety, are highly prevalent among people with Ehlers-Danlos syndrome (EDS) and generalized hypermobility spectrum disorder (G-HSD), according to a retrospective study.
“Given the prevalence of mental health concerns in this population, it is critical to provide mental health support to patients with EDS and G-HSD as a standard part of a multidisciplinary care approach,” researchers wrote in the study, “Rates of mental health concerns among individuals assessed at the GoodHope Ehlers-Danlos Syndrome Clinic,” which was published in the Orphanet Journal of Rare Diseases.
EDS and G-HSD are hereditary connective tissue disorders characterized by unusually mobile joints (hypermobility), fragile skin, and whole-body dysfunction. These conditions are often associated with chronic pain, gastrointestinal issues, dysfunction of the autonomic nervous system controlling involuntary bodily functions, respiratory symptoms, and psychological disorders such as anxiety, depression, ADHD, and psychosis.
A team led by researchers at Toronto General Hospital’s GoodHope Ehlers-Danlos Syndrome Clinic retrospectively analyzed data from 1,035 patients who were followed at their clinic between June 2018 and June 2021. Some 88.5% of the patients were women and their mean age was 35.3.
While previous studies have suggested a connection between hypermobility and anxiety, these have largely relied on outdated diagnostic criteria and have not fully captured the complexity of these disorders, the researchers said.
Issues vary with diagnosis
All study participants completed self-reported mental health screening questions as well as the Inventory of Depressive and Anxiety Symptoms scale to quantify dysphoria (a feeling of unease or discomfort), and the Borderline Symptom List 23, which assesses various emotional, behavioral, and cognitive symptoms associated with borderline personality disorder, prior to assessment at the clinic.
Forty-two patients were diagnosed with non-hypermobile EDS subtypes, 81 with hypermobile EDS (hEDS), and 410 with G-HSD. Another 502 patients didn’t meet the diagnostic criteria for either EDS or G-HSD.
Pain, fatigue, and autonomic issues varied with diagnosis. People with hEDS, G-HSD, and non-EDS/G-HSD reported more pain, fatigue, and autonomic problems than those with non-hypermobile EDS.
Across all groups, 87.5% had depression or anxiety, and 19% reported eating problems. Post-traumatic stress disorder (PTSD) was an issue for 34.8%, self-harm was cited by 29.2%, and 18.6% reported suicidal thoughts or actions.
People diagnosed with G-HSD were more likely to have experienced anxiety or depression compared with those without EDS/G-HSD or those with other types of EDS that don’t involve hypermobility. No other differences emerged across diagnostic groups.
When looking at mental health diagnoses reported by doctors during history-taking, most patients had anxiety (62%) and depression (53%). Fewer patients reported PTSD (4.7%), personality disorders (1.5%), obsessive-compulsive disorder (2.1%), past suicide attempts (1.9%), current suicidal thoughts (7.8%), and self-harm (3%).
Those with G-HSD were 2.77 times more likely to report a past diagnosis of depression and three times more likely to have had anxiety than patients with non-hypermobile EDS subtypes. No differences between diagnostic category were observed concerning a history of post-traumatic stress disorder, personality disorder, or obsessive-compulsive disorder.
In all groups, nearly half of the patients (43.4%) showed signs of likely having an internalizing disorder, and about 1 in 5 (20.1%) showed signs of likely having borderline personality disorder.
“Rates of reported mental health diagnoses among all individuals assessed at the GoodHope EDS Clinic were well above the lifetime prevalence of these disorders in the general population,” the researchers wrote. “Future research should seek to determine if there are unique mechanisms underlying mental health concerns in EDS/G-HSD that could point to population specific treatment options.”
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