Quality of paediatric epilepsy care and rates of death and hospital admission among children & young people with epilepsy in England: national longitudinal data-linkage study
Background Concerns have been raised about variation in care quality and outcomes among children and young people with epilepsies in England. We aimed to investigate the relationship between quality of paediatric care, hospital admissions and epilepsy-related deaths (both before and after transition to adult services). Methods We accessed unit-level data from Round 1 (2009-11) and Round 2 (2013-14) of the Epilepsy12 national clinical audit, and data on death registrations and unplanned hospital admissions. We investigated the association between unit-level performance in involving a paediatrician with epilepsy expertise, Epilepsy Specialist Nurse (ESN), and Paediatric Neurologist (PN) in Round 1 and the proportion of adolescents with epilepsy admitted to each unit who subsequently died during the study period (2009-15). We also investigated whether change in Epilepsy12 performance between the audit rounds was associated with change in the standardised ratio of observed:expected unplanned epilepsy admissions. Findings 79/1164(7%) of patients included in the PN analyses died; 54/1164(5%) deaths occurred post-transition. Regression models estimated an absolute reduction of 6%(95% CI 1-13%) in total mortality risk and 6%(1-11%) post-transition mortality risk between units where all versus no eligible patients were seen by a PN. In dichotomised analyses, units where all eligible patients were seen by a PN were estimated to have 5%(0-9%) absolute mortality reduction and 5%(1-8%) reduction in post transition deaths compared to other units. There was no significant association between performance on other audit measures and mortality. In units where access to an ESN deteriorated, the standardised ratio of epilepsy admissions increased by a mean of 0·21 (95% CI 0·01-0·42). Interpretation Among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care predicts lower mortality in the period after transition to adult services. Reduced access to an ESN was associated with an increase in paediatric epilepsy admissions
