G306 Transitional care from paediatric to adult for adolescent with epilepsy: local survey

Abstract

Background Transition is a ‘planned, purposeful movement of the young person from a child centred to an adult orientated healthcare system’.1 The transitional period from paediatric to adult care can be challenging for adolescence with epilepsy. Children with chronic illnesses often struggle more than their peers during adolescence, when healthcare providers change from the nurturing, family-centred style of paediatrics to the individualistic, ‘autonomous’ approach of adult healthcare.2 Poorly managed transitional period can therefore cause poor treatment compliance, and may have long term implications on the epileptic control and well-being of the adolescence.3 According to the National Institute for Health and Clinical Excellence (NICE), adolescence with epilepsy should have an agreed transition care period with joint adult and paediatric services.4 Hence, this qualitative survey aims to understand the patients’ perspective of the joint transitional clinic. Methods A 7 questions, qualitative questionnaire is used to survey the transitional of care for adolescence with epilepsy in joint adult and paediatric service in our trust. The clinic is held 4 times a year, and attended to 35–40 patients with the presence of paediatrician and adult neurologist. The questionnaire was distributed to the adolescent/parents during the transitional clinic. Results The survey showed that 90% of patients are satisfied with the care, with 60% of respondents suggested that more information on the cause of epilepsy and possible side effects of medication should be provided. The survey also highlighted the issues of lengthy clinic waiting times and the need for several clinic visits before transfer. Additionally, parental/patients’ concerns around driving, career options, contraception, and epilepsy inheritance were also raised. Conclusion There are no data available to which model would best fit the transitional epilepsy clinic. However, the survey found that patients/parents are generally satisfied with the transitional care of joint paediatric and adult services. The transition process is complex. Therefore, the utilisation of best available resources such as, epilepsy nurses, family support groups, specific interest groups, and primary care services should be planned early. Lastly, future survey should address the concerns on education about driving, career options, epilepsy inheritance and contraception in adolescence with epilepsy. References . Blum RW, Garell D, Hadgman CH, et al. Transition from child-centred to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine. J Adol Health1993;14:570–6. . Camfield P, Camfield C, Pohlmann-Eden B. Transition from paediatric to adult epilepsy care: A difficult process marked by medical and social crisis. Epilepsy Curr2012July-August;12(Suppl 3):13–21. . Camfield P, Gibson P, Douglass L. Strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders. Epilepsia2011;52(Suppl 5):21–27. . National Institute of Clinical Excellence (NICE). Epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. Clinical GuidelineFebruary 2016;137. NICE.