Opportunities for better self-management: Profiling hEDS and the role of individual, demographic and diagnostic factors on health and wellbeing with chronic conditions.

Factors affecting physical and psychological outcomes for those with chronic conditions are complex, extending beyond medical symptomology to a plethora of demographic influences. Living with hypermobile Ehlers-Danlos Syndrome (hEDS) is characterised by diagnostic delay and numerous comorbidities, known to impact wellbeing. This high-powered study (n = 415 participants) investigates the mediating effect of diagnosis, comorbidity and age on wellbeing, and provides insights into the effects of the latest hEDS reclassification. Validated measures were used to assess quality of life, perceived social support, physical health, fatigue, anxiety, pain and loneliness. Results indicated worse outcomes for those diagnosed after the reclassification and for those living with higher numbers of comorbidities. Conversely, improved outcomes were associated with older age. These findings were further supported by insights captured in participants’ demographic profiles where a wider breadth of comorbidities were recorded than previously identified, Meanwhile, there was no evidence of a change in the route to diagnosis over time, and data showed ongoing limitations in terms of the options for effective treatment. Together these findings point to the potential effectiveness of self-management techniques for improving well-being with chronic conditions and highlight the need for improved awareness of (h)EDS and its management amongst primary care practitioners.