Implementing a new adolescent epilepsy service: Improving patient experience and readiness for transition

• Published in: Journal of paediatrics and child health 2019-07, Vol.55 (7), p.819-825
• Main Authors: Le Marne, Fleur A, Towns, Susan J, Gaskin, Claire, Ho, Jane, Baker, Richard, Beavis, Erin, Bye, Anne M
• Format: Article
• Language: English
• Subjects: adolescent; Continuity of care; education; Epilepsy; Health care delivery; Teenagers; transition; Transitions; Well being; Young adults
• ISSN: 1034-4810; 1440-1754
• DOI: 10.1111/jpc.14301

Aim To implement and appraise a new model of care in terms of: patient experience, knowledge of epilepsy, readiness for transition and emotional and behavioural support in a new purpose‐built facility for adolescents and young adults. Methods The new model of care included: upskilling of neurology staff in adolescent engagement and provision of group education sessions on epilepsy and mental health (MH), along with MH support, in a new purpose‐built adolescent facility. Parameters examined pre‐ and post‐attendance at the new clinic included: adolescent experience of service delivery, transition readiness, emotional and behavioural well‐being, epilepsy knowledge and medication adherence. Results A total of 45 adolescents (mean age 15.7 years) attended the new epilepsy clinic between February 2017 and December 2017. Adolescents felt significantly better informed following education in relation to epilepsy and driving, alcohol/street drugs and birth control/pregnancy. There was no significant improvement in self‐reported medication adherence, transition readiness or mental well‐being at follow‐up. While MH education was ranked highly in terms of importance by adolescents and parents at baseline, attendance at MH education and engagement with MH support was low. Conclusions This paper documents what is important to young people with epilepsy regarding service delivery. The new adolescent service was well received. Based on feedback from adolescents and parents relating to the service, and the suboptimal uptake of MH supports, the model of care has been revised to reduce attendance burden on families and improve patient experience.