The transition of adolescent and young adult to adult in the healthcare system, i.e. the transition from pediatric adult healthcare is a planned and purposeful process, that should address the psychosocial, medical, vocational and educational needs of adolescents and young adults with chronic medical conditions.
However, the transition from the pediatric 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.
This study aims at developing new pathways to involve young people with epilepsy in the transition from pediatric 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 is 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.
Start: January 2021
End: January 2024
The project is a PhD project by Ole Abildgaard Hansen.