ICNC Abstracts, ICNC 2018

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Transition to adult medical care for adolescents with epilepsy-identifying care gaps in current models: Perspectives from a UK neurology tertiary centre
Thomas Robb

Last modified: 2018-09-15

Abstract


ObjectivesPaediatric Epilepsy often presents in the context of cognitive and neurodevelopmental comorbidities(1). These patients represent a significant proportion of patients requiring transition to adult care (2).Epilepsy-specific transition frameworks exist, however there is a lack of data evaluating how theseguidelines are implemented. We performed a retrospective cross-sectional study of the epilepsy-transition services at a tertiary paediatric neurology centre in the UK against the existing framework fortransitional care for young people with epilepsy in the UK (3,4).MethodsElectronic records for all epilepsy patients under the care of our institution that were over 14 years ofage as of 01/01/2018 were sourced. Records were analysed to establish the centre’s adherence to UKtransition guidelines. Telephonic interviews were conducted with patients who had completedtransition to explore factors that influence transition outcomes.Results98 patients (18.07±1.66 years) were identified. Transition discussions had occurred in a similarproportion of patients with and without comorbidities (neurodevelopmental, cognitive & psychiatric andmovement disorders) (40.6% & 48.5% respectively; p>0.05). There was no significant difference in theage at which transition discussions were commenced in patients with and without comorbidities (16.69± 0.60 yrs. and 16.77 ± 0.72 respectively; p>0.05). Discussions around health and independent livingoccurred in 48.5% and 53.1% of patients with and without comorbidities respectively.46 patients (46.9%) had completed transition. A transition coordinator was involved in 1% of thesecases, and transition was first mentioned on average 4.8 months before the final paediatricconsultation. Telephone interviews were conducted with 16 of these patients. 50% of patients reportedbeing ‘very dissatisfied’ with at least one aspect of the transition service. Recurring interview themesincluded a reported lack of communication between children’s and adult services, and a lack ofaccountability over who should be responsible for providing care between ages 16-18.ConclusionsDiscussion around transitions occurred later than recommended and did not appear to be guided bypatient complexity. Inter-organisation communication was highlighted as major barriers for patientsatisfaction. A proposed new transition pathway is currently being evaluated.

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