The transition from paediatric to adult healthcare

However, the transition from the paediatric and family-centred health care to the adult, individually focused treatment often results in a loss of follow-up for young adults with chronic diseases and poor patient and parent satisfaction. Further, it is often associated with deterioration in the health of adolescents with chronic conditions which indicate a need for alternative ways to deliver health care for this group of patients and their parents.

Epilepsy in children and young people can be associated with comorbidities, including learning difficulties, mental health issues, behavioural problems and motor impairments. The needs for young epileptics include peer relationships, compliance, alcohol, autonomy, detachment from parents, self-esteem, lovers, loneliness, social isolation, restrictions versus opportunities, driver’s license, educational and business choices.

AIM

This study aimed at developing new pathways to involve young people with epilepsy in the transition from paediatric to adult healthcare services. The pathway should promote and support patients’ needs and wishes for self-care, empowerment and quality of life supported by telehealth in order to base the transition on the special needs and wishes that characterise young epileptics.

The aim was to create conditions and framework for the young adults to live a normal everyday life, thus avoiding unnecessary visits to their own doctor and hospital.

RESULTS

The project developed the intervention Joint Transition Clinic based on the perspectives of the patients, their parents and the healthcare staff. The clinic was pilot tested from January 2024 to May 2024.

The experiences with Joint Transition Clinic were then evaluated, which showed that the clinic gave participants a sense of security and confidence in being able to express their needs. The strengthened collaboration and trust between paediatric and neurological nurses also meant that young epileptics became more active in their consultations.

The project has contributed new knowledge about the patient group's experiences and needs in the transition process and living with epilepsy in everyday life. In addition, the project has shown how a structured and user-centred approach can improve the transition process. The results show the importance of joint clinical interventions that can support young people with epilepsy in developing responsibility, independence and self-confidence as they navigate transitions.

PARTNERS

The project was a PhD project by Ole Abildgaard Hansen.

The Hans Christian Andersen Hospital for Children and Adolescents and the Department of Neurology at Odense University Hospital were partners on the project.

EXTERNAL FUNDING

The project was anchored at the Department of Neurology.