Dados do Trabalho

Título

Knowledge about SUDEP: what people with epilepsy and families in Brazil think about counseling? Is it different from other countries? When, how, who and what might change after information.

Resumo

Introduction: Sudden unexpected death in epilepsy (SUDEP) is the second leading cause of death in people with epilepsy (PWE), affecting 12% of those with drug resistant seizures. The concept that SUDEP counseling would cause fear, anxiety and finally not change outcome evolved due to recognition of effective prevention measures. Nevertheless, worldwide awareness is still insufficient, despite counseling is advised by international societies, such as American. Academy of Neurology, American Epilepsy Society and National Institute for Health and Care Excellence - UK.
Objective: Assess the knowledge, preferences and attitudes of PWE, family members and caregivers (FC) about SUDEP in Brazil.
Methods: An online questionnaire approved by ethics committee was available on social media of Brazilian Epilepsy Association.
Results: 533 complete questionnaires (311 PWE; 222 by FC on behalf of patients), median age 33.5 (+9.64) and 18.8 (+15.03) years, respectively, most female (84,9% PWE; 57.2% FC). Mental/intellectual or physical disability was declared by 15% (PWE) and 32.4% (FC), active seizures by 61.1% and 71.6%, and polytherapy by 49.8% and 64.4%. Tonic clonic seizures were reported in the last 12 months by 56.9% and 81.7%.
48.6% PWE and 61.3% FC heard about SUDEP, rarely by clinicians (11.3% and 16.2%). No counseling by physicians were available in 89.6% and 76.4%, despite most wanted to know (76.5% and 77.9%), at the first consultation/diagnosis (34.1% and 41.2%) or during early follow-up (32% and 21.3%). Neurologists and epileptologists should be responsible for the information according to PWE (81.4%) and FC (82.9%).
Most PWE and FC (96%) reported that they would change behaviors after being informed about SUDEP risk such as accepting devices to detect seizures, new treatments, lifestyle changes and better adherence to them.
Fear and sadness were the most common reported feelings, but despite that, >80% responders believed that counselling should be done to all.
Conclusion: PWE and FC in Brazil want to know about SUDEP, by neurologists and epileptologists, at the diagnosis or soon. They consider that treatment and behavior changes would potentially be used to prevent this issue. Preferences in Brazil are similar to those observed in other culturally distinct countries. Our data suggest low adherence to international recommendations, and Brazilian neurologists and epileptologists should review their practices based on patient and family preferences, in addition to the possibility of preventing SUDEP.