Abstract

Introduction: The transition from pediatric to adult care in patients with epilepsy is a critical and challenging process, given the significant impact of the disease on the patients’ physical, psychological, and cognitive development. Epilepsy, in addition to being a chronic neurological condition, is often associated with comorbidities that complicate disease management, particularly during adolescence.
Objective: This study aims to identify and understand the challenges faced by adolescents with epilepsy during the transition from pediatric to adult care, assessing their comorbidities, autonomy, and perceptions, as well as those of their caregivers.
Methods: Between 2019 and 2023, structured and validated questionnaires were administered to 31 adolescents aged 12 to 18 years diagnosed with epilepsy at the ABC Faculty of Medicine University Center, in Santo André, São Paulo, Brazil. The questionnaire included 55 questions and was administered to both patients and their caregivers, focusing on disease understanding, promotion of autonomy, and analysis of psychosocial influences.
Results: The results indicated a high prevalence of psychiatric and behavioral comorbidities, such as anxiety (46%), ADHD (33%), depression (6%), and OCD (3%). It was also observed that 53% of adolescents did not fully understand their health condition, and 45% were not actively involved in their medical care. Additionally, 87% of patients did not have a career plan, reflecting the significant impact of epilepsy and its comorbidities on their future perspectives.
Discussion: The discussion highlights the complexity of the transition process and the need for a multidisciplinary and personalized approach, including education about the disease, psychosocial interventions, and promotion of autonomy. The lack of patient understanding and engagement, combined with the high prevalence of comorbidities, underscores the need for policies and guidelines that integrate these aspects to ensure a successful transition.
Conclusion: The study concludes that the transition from pediatric to adult care in patients with epilepsy requires careful planning and continuous support to improve health outcomes and long-term quality of life. An integrated approach that prioritizes the patient’s overall well-being is crucial to ensure that these adolescents achieve full autonomy and a successful transition to adult life.