Dados do Trabalho
PERCEPTION OF TRANSITION FROM PEDIATRIC TO ADULT HEALTH CARE IN PATIENTS WITH EPILEPSY AND ITS COMORBIDITIES - A EXPERIENCE REPORT
Epilepsy is a heterogeneous group of neurological conditions that affects children and adults. Each patient needs unique transitions from childhood to adult care. Transition is the planned process of transferring patients with epilepsy of childhood onset to adult care. An unsuccessful transition can result in high rates of follow up loss, poor adherence to treatment, and poor outcomes ranging from disease reactivation to death.
Epilepsy is a condition that tends to affect children more than other chronic diseases, with comorbidities like psychosocial consequences that can be more limiting than the epileptic seizures themselves.In this context, we show our work in transitioning young patients with epilepsy and its comorbidities, aiming to invest in the well-being and autonomy of children and their families as a focus of engagement.
To identify and understand the difficulties experienced by patients with epilepsy in the transition process, their autonomy, as well as to learn more about their views and opinions on the subject.
In 2019 to 2023, we applied a structured and validated questionnaire to 31 adolescents aged 12 to 18 years, with 55 questions, including questions about the epileptic syndrome, their understanding of the disease, autonomy and main comorbidities
Resultados e Conclusões
31 patients answered the questionnaires, and all were screened for inclusion and exclusion criteria. Of these, we found a large clinical heterogeneity, with most patients not understanding the type of epilepsy (63%) and 53% unaware of their current health status. The most common comorbidities were anxiety (46%), ADHD (attention deficit hyperactivity disorder) (33%), depression (6%) and OCD (oppositional defiant disorder) (3%). Furthermore, 45% of them do not participate in their health care, and 87% have no career plan and cannot analyze the impact of the disease on their future.
In the pediatric population, epilepsy, as a condition with great neurological impact, are associated with numerous comorbidities and psychosocial obstacles, which put their physical, psychological, and cognitive development at risk.
Our study highlights the importance of identifying the environmental, social, economic, and developmental influences that make each patient and family unique, contributing to differences in the quality of health in the adolescent population and so, creating a better transition of care, which can help with future guidelines and policies around the subject.
Epilepsy; Transition; comorbidities;
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BARBARA MAINI DE CARVALHO, ALLANA KRISTINA BORGES COSTA, AMANDA SOUSA RIBEIRO, HANA ANDRADE DE RAIDER BRITO, DANIELE FERREIRA ROCHA, JULIANA GREGHI HERNANDEZ , RUDA ALESSI, DANIELA FONTES BEZERRA, RUBENS WAJNSZTEJN