Short summary

The transition of young people with epilepsy (YPWE) from pediatric to adult health-care services often results in loss to follow-up and poor patient and parent satisfaction and is often associated with deterioration in health. This study aims to develop new pathways of involving YPWE in transition, which can support and promote patients' self-care needs and wishes, empowerment and quality of life, supported by telehealth.

Rationale

Epilepsy is the most common neurological condition in adolescence, with a prevalence of five in 1,000 children and an incidence of approximately five to seven cases per 10,000 children from birth to 15 years of age. Epilepsy in children and young people can be associated with comorbidities, including learning difficulties, mental health issues, behavioral problems, and motor impairments . The special needs that characterize young epileptics are peer relationships, compliance, alcohol, autonomy, detachment from parents, self-esteem, lovers, loneliness, social isolation, restrictions versus opportunities, driver's licenses, educational and business choices.

Transition 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 as they progress to an adult, individual focused health care provider from a pediatric and family-centered health care .

However, the transition to adults services often results in loss to follow-up for young adults with chronic diseases and poor patient and parent satisfaction . Furthermore, it is often associated with deterioration in the health of adolescents with chronic conditions , which indicate needs for alternative ways to deliver health care for this group of patients and their parents.

Therefore, other possibilities must be considered to ease the transition of YPWE and their parents and a possibility could be telehealth, while it provides opportunities for providing care over distances and can be an effective method to support patient involvement in transition process, because technology creates new avenues, for example, in organization, communication, information and cooperation between patients, their families and health professionals .

The aim is to develop new pathways of involving the adolescents and young adults with epilepsy in transition from pediatric to adult healthcare services that can promote and support patients' self-care needs and wishes, empowerment and quality of life, supported by telehealth so that the transition is based on the special needs and wishes that characterize young epileptics.

The project consists of 3 phases, each with its own purpose;

Phase 1: Coverage phase with identification of users' needs and wishes;

Phase 2: Development phase with experiments and tests;

Phase 3: Pilot phase with testing of a eHealth solution in practice

The research approach is explorative. It uses Participatory Design as an overall design (PD) that employs methods in the form of participant observation, individual interviews, systematis review, focus group interviews, self-reported questionnaires and creative workshops to generate knowledge . PD is based on the philosophy that users are involved from development, the use and the evaluation when new technology is to be designed . The telehealth solution will be developed, tested and evaluated based on the collected data, in close cooperation with users.

The study will contribute to new pathways and knowledge about the transition process in relation to how health care can be organized so that the process better meets YPWE self-care needs and wishes.

Description of the cohort

The participants (8-10 YPWE and their parents) will be recruited among patients from H. C. Andersen pediatric and adolescent hospital and the Department of Neurology. Further, a team of 4 experienced nurses and 4 Senior Hospital Physicians who will be responsible for the adolescents and young adults with epilepsy will be enrolled.

Inclusion criteria

Participants must be able to understand and speak Danish without the need for an interpreter.

Participants must have onset of epilepsy in childhood or adolescence and have relatively normal cognition defined by the ability to attend Danish primary school, age between 13-19 years.

Data and biological material

Etnografic data; notes, pictures, video, interviews, demographics

Collaborating researchers and departments

Hans Christian Andersen Children's Hospital and Centre for Innovative Medical Technology (CIMT), Odense University hospital, Department of Clinical Research; SDU

• Main supervisor; Professor, RN, Ph.D. Jane Clemensen

Department of Neurology, Odense University Hospital

• Co-supervisor: Professor, Dr. Med. Habil. Christoph P. Beier