Przejście z opieki pediatrycznej na opiekę dla dorosłych u pacjentów z epilepsją
Transition From Pediatric to Adult Care in Epilepsy
W skrócie
Badanie dotyczy procesu przejścia pacjentów z epilepsją ze specjalistycznej opieki dla dzieci do opieki dla dorosłych. Badacze opracowują i testują strukturalne programy przejściowe, które przygotowują młodych pacjentów do samodzielnego zarządzania swoją chorobą, rozumienia leczenia i podjęcia odpowiedzialności za swoją opiekę zdrowotną. Program jest przeznaczony dla nastolatków i młodych dorosłych z epilepsją, aby zapewnić im płynne przejście między rodzajem opieki i zminimalizować problemy medyczne i psychospołeczne związane z tą zmianą.
Oryginalny opis (angielski)
The transition from pediatric to adult healthcare services for individuals with epilepsy represents a major clinical and organizational challenge. This complexity arises from the heterogeneity of the underlying epileptic disorders and the frequent presence of multiple comorbidities. Furthermore, the process entails a profound shift in the patient-physician relationship, which must be re-established to allow open discussion of sensitive issues and to adapt to a different model of care.
In pediatric settings, medical care is predominantly family-centered, with parents actively involved in the decision-making process. In contrast, adult care is primarily patient-centered, emphasizing individual autonomy and self-management. The \*\*transition\*\* therefore constitutes a structured process designed to prepare adolescents and young adults for adult-oriented healthcare. It aims to enhance their understanding of epilepsy, increase awareness of available treatments, and develop self-management skills that help minimize the long-term psychosocial and medical impact of the disorder.
The \*\*transfer\*\*, by contrast, refers to the formal handover of medical responsibility from pediatric to adult healthcare providers. While transfer is an event, transition represents a multidimensional process that should begin well before the actual shift of care.
Over the past decade, several studies have sought to address the challenges associated with this critical phase by proposing transitional programs based on different organizational models. These structured interventions are designed to bridge the gap between pediatric and adult services, fostering continuity of care and improving clinical outcomes.
A recent and promising example is a \*\*French transitional model\*\*, published following a retrospective study involving 70 persons with epilepsy (PWE). This model provided evidence supporting the feasibility and benefits of a dedicated, multidisciplinary transition program tailored to the specific needs of young individuals with epilepsy.
In contrast, within the Italian scientific and clinical context-particularly in the field of epilepsy-no formally structured or validated transition program has yet been established. This gap underscores the need for the development of standardized national guidelines and the implementation of evidence-based transitional pathways.
A well-designed transition program can significantly facilitate the adjustment of adolescents to adult neurological care, promoting therapeutic adherence, clinical stability, and psychosocial well-being. Ultimately, structured transitional care represents a crucial step toward ensuring continuity, safety, and quality of care for individuals with epilepsy as they move from pediatric to adult health services.