Important to validate personal cognitive concerns in hEDS: Study
Patients more likely to have subjective cognitive challenges, difficulty socializing
Although people with hypermobile Ehlers-Danlos syndrome (hEDS) may not have many measurable cognitive deficits, they are more likely to experience subjective cognitive challenges and difficulty participating in social activities than their peers without the disorder, a study reports.
“We speculate that the cognitive difficulties noted by many of the participants with hEDS may be transient, fluctuating with other factors, and do not represent indicators of permanent or progressive cognitive loss or impairment,” researchers wrote.
Participants’ subjective experience of cognitive challenges correlated with other psychological symptoms, including pain and mood. Taking into consideration their subjective experience as well as quantitative cognitive measures may be helpful in designing effective interventions, researchers note.
The study, “Neuropsychological Function and the Relationship Between Subjective Cognition, Objective Cognition, and Symptoms in Hypermobile Ehlers–Danlos Syndrome,” was published in Brain and Behavior.
hEDS, the most common type of EDS, includes symptoms like fragile skin, joints that move past the normal range of motion, and frequent joint dislocations. hEDS can be passed from parents to their biological children, but researchers haven’t identified most of the specific mutations that lead to hEDS.
hEDS not ‘been seen as a disease with direct neurological effects’
“Cognitive functioning in hEDS has received very little research attention, presumably because hEDS has not historically been seen as a disease with direct neurological effects,” the researchers wrote. Regardless, people with EDS and other hypermobility disorders tend to report cognitive symptoms, as well as high rates of depression and anxiety. Pain and fatigue related to hEDS have been associated with cognitive symptoms.
To probe potential relationships between these and other clinical factors and objective measures of cognitive function, the team compared participants with hEDS to age- and sex-matched control participants. Across the study, the average age was 27 and 11 of 12 participants in each group were female.
Cognitive testing included a battery of assessments for attention, executive function (such as planning and working memory), memory, and language. “Across all of the cognitive variables, there was only one significant difference in objective cognitive measures, which was for memory for a list of words after a delay,” the researchers noted.
However, hEDS participants rated their own cognitive function significantly lower. They also had higher levels of pain, depression, and fatigue, and rated their ability to participate in social activities significantly lower than their peers in the control group.
People aren’t typically very accurate in self-assessments of cognitive deficits, and factors like depression can skew perceptions toward a more negative view. However, in a larger group of hEDS participants (18 individuals), the researchers found moderate correlations between subjective cognitive ratings and three of the objective cognitive tests. These associations occurred in tests of working memory, visuospatial function (the ability to perceive and use visual information), and executive function.
Subjective cognition correlated with some areas of objective cognition
“Our finding that subjective cognition correlated with some areas of objective cognition does signify that people with hEDS are identifying tangible cognitive performance,” the scientists wrote.
Poorer perceived cognition also had moderate correlations with greater depression, anxiety, fatigue, and pain. The strongest correlation was with social ability, indicating a relationship between experiencing cognitive challenges and difficulty participating in social activities.
These relationships “[highlight] the clinical importance of recognizing and validating subjective cognitive concerns, in the context of globally non-impaired objective cognition, as potential avenues for treatment,” the team wrote.
Although most objective cognitive measures didn’t differ significantly between the hEDS and control groups, the team noted that study conditions didn’t fully mirror the real world. Participants chose a time of day when they felt they were at their cognitive best to complete the study, and took breaks or rescheduled when they experienced pain, fatigue, and other symptoms. The study’s small sample size was noted as a limitation.
“We must consider the fluctuating nature of cognition, especially in the context of a multifaceted disorder that often generates pain,” the researchers wrote, adding that addressing underlying hEDS symptoms like pain may also have positive effects on cognitive abilities.
“Clinical trials of cognitive interventions for this population are needed,” they wrote.
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