Aim NICE guidelines recommend supporting young people with chronic disease before, after, and during transfer to facilitate safe and effective transition from paediatric to adult services. Evidence suggests that young people are not receiving appropriate anticipatory guidance from their paediatric provider, and we sought to survey users’ experience of the transition service.
Methods We performed a cross-sectional study on ten adolescents from a single district general hospital epilepsy service. Patients recently transitioned were identified, contacted by phone, and asked 30 questions from an adaptation of the validated Adolescent Assessment of Preparation for Transition Survey.
Results Average age sampled was 18 years (range 17 – 21). 50% (n=5) were male, and 60% (n=6) knew his/her diagnosis. Average wait time for appointment with adult provider was 4 months (1 – 6). 50% (n=5) of patients had seen their adult provider alone and 90% (n=9) felt they had enough time with the adult provider. Only 1 patient had an allocated epilepsy nurse specialist in adult care. All respondents (n=10) were taking antiepileptic medication over the 12 months preceding transition. Only 30% (n=3) had formal discussions about rescue medications, sick day rules, and missed pills with their adult provider. Counselling by adult providers in regard to epilepsy-specific lifestyle adaptations was limited (see table). Only 40% of patients were counselled for sudden unexplained death in epilepsy. Two patients requested further information about the impact of missed doses of medications, and effects of cannabis and alcohol intake on symptoms.
Conclusion Our transition service demonstrated limited: focus on information prioritisation, support by paediatric provider after transition, and knoweldge of disease self-management by patients. A service-specific individualised transition checklist was implemented in order to improve user experience and information sharing throughout transition.
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