Objectives It is important that there are clear transition processes for adolescent patients from paediatric to adult care. This is particularly important in adolescents with epilepsy, as these patients are often on long term anti-epileptic drugs and require specialist follow up regarding occupational health, driving and pregnancy. This audit aims to assess the clinical characteristics of adolescent epilepsy patients awaiting transition to adult neurology care, to quantify the duration of delays in being reviewed by an adult neurologist, and to provoke discussion on how to address the issues around delayed transition.
Methods Named paediatric consultants running specialist epilepsy clinics and paediatric epilepsy nurse specialists were contacted by email in each of the 5 Health and Social Care Trusts (HSCTs) in Northern Ireland in November 2020 and again in August 2022. They were asked to submit anonymized data on patients attending their paediatric epilepsy service who were over the age of 16 years old and who had been referred to adult neurology for follow up. The data included their current age, the number of anti-epileptic drugs they were on, if they were attending a mainstream school and the date they had been referred to adult neurology services. An audit tool was created to make data capture and analysis easier for the submitting teams.
Results Data was obtained from 3 HSCTs in November 2020 and 2 HSCTs in August 2022. In all HSCTs a majority of adolescent patients attended mainstream school, and most were on a single anti-epileptic drug. In the Northern Trust in 2020 13 patients were awaiting review with adult neurology, with an age range of 16–19 years old, and 12 patients were waiting longer than 12 months for review. This had risen to 20 patients in August 2022, with an age range of 16–21 years old and 15 patients waiting longer than 12 months. In the Western Trust no data was obtained in 2020, and in 2022 50 patients were awaiting review with adult neurology, with 33 of them having waited longer than 12 months.
Conclusions This audit demonstrates the ongoing difficulties that are experienced by paediatric epilepsy services in Northern Ireland in transitioning adolescent patients to adult neurology. A number of factors are contributing to this, including increasing demands on the adult neurology service and workforce related issues. This audit demonstrates that the situation has deteriorated during the last two years, and there is a considerable geographical variation in the waiting times for adult neurology services. Action is required to ensure that the health of adolescents with epilepsy is not adversely affected.
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