Ethnicity, hypermobility syndrome and Ehlers-Danlos syndrome: A study based on hospital admissions

Abstract

The purpose of the study was to identify any evidence of different patterns of disease for Ehlers Danlos Syndrome (EDS) and Hypermobility Syndrome (JHS) in the White British and South Asian communities in England. The numbers of hospital in-patients in ten NHS Trusts, between 2016 and 2020, in whom a diagnosis of EDS or JHS had been recorded were identified through Freedom of Information (FOI) requests. The condition was either the primary diagnosis or a secondary one, incidental to the reason for admission. The ten Trusts were selected because they served areas with a significant South Asian population and had been involved in previous studies of discrimination in the delivery of care. The study also assessed whether there was evidence of any of the Trusts underserving their South Asian community with lesser levels of recognition of EDS and JHS. Overall South Asian patients were almost four times more likely to have been diagnosed as having JHS. This proportion was statistically significant (z = -11.69, p <0.00001). In Burton and Derby, Cambridge and Leicester the proportion of South Asian patients diagnosed as having EDS was significantly lower than in other Trusts (z = 9.4, p <0.00001). This was also the case for JHS (z = 8.09, p < 0.00001). This would indicate that in these three Trusts both conditions are underdiagnosed in the South Asian community. The significance of these findings is discussed.

Keywords

• ehlers-danlos syndrome
• hypermobility syndrome
• south
• asian
• ethnicity