Researchers at England’s Alder Hey Children’s NHS Foundation Trust conducted an overview of the main challenges in the transition of epileptic patients from pediatric care to the adult healthcare system, with special focus of how families and patient teams can provide a safe and successful transition between services. The authors also discussed different approaches to transition and management in epilepsy care.
The review paper, “Epilepsy: addressing the transition from pediatric to adult care,” was published in Adolescent Health, Medicine and Therapeutics.
Epilepsy is the most common neurological disorder in adolescence, and is associated in children and teens with learning difficulties, motor impairments, and behavioral problems.
Adolescence is a critical period of great changes, both biological and psychosocial, and epilepsy adds even more challenges to a young person, their families, and healthcare professionals. The success and safety of the transition to adult healthcare, which usually happens at age 16 or 17, may have a long-term impact in the well-being of the adolescent and future adult.
Transition, sometimes defined as the “purposeful planned process that addresses the medical, psychosocial, and educational/ vocational needs of young people with chronic physical and medical conditions as they move from child-centered to adult-oriented healthcare systems,” differs from “transfer,” which is a single event with the handover of care from one team to another. So transition, a dynamic and structured process, has become increasingly important as the survival of children with complex diseases has also increased.
The authors identify several barriers to the transition process, primarily the reluctance of families. This is often caused by the loss of long relationships between them and pediatric teams, which, in epilepsy care, provide nurturing and family-centered care, with focus not only on the child’s health but also the impact of the entire family.
In the United Kingdom, there are four models that address the transition and ongoing care of patients ages 16-19. The first states that the patients may remain in pediatric care; the second, that they may be discharged to the care of a general practitioner; in the third, the young patients may be transferred to an adult neurologist or physician; and the fourth proposes an epilepsy transition service where adolescent and adult issues can be addressed and discussed in an appropriate setting. Transition clinics often face problems like staff conflicts, financial support, and quality of service.
The researchers also discussed the importance and options regarding pharmacological treatments and lifestyle issues during the transition process, as well as the views of patients and families on the process.
“Despite the challenges involved in transition, the pediatrician experiences professional satisfaction from helping the young person adapting well to adult life with his/her epilepsy, and from supporting his/her carers through this difficult personal milestone,” the researchers concluded.