Navigating barriers to epilepsy surgery: a national survey of patient and neurologist perspectives

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OBJECTIVE: Epilepsy surgery is underutilized globally due to patient and/or caregiver reluctance and neurologist knowledge gaps. In Pakistan, the treatment gap is 70%-94% for medically refractory epilepsy (MRE). This study assessed the knowledge and practices of neurologists and patients to identify barriers to adequate epilepsy surgery provision in Pakistan. METHODS: The authors conducted a cross-sectional study consisting of two surveys. One survey was designed for epilepsy patients and their caregivers. The medical records of patients diagnosed with epilepsy at the authors' hospital between July 2018 and December 2020 were retrieved from the neurophysiology database. Patients or their caregivers were then contacted via telephone to complete the survey. The second survey was designed for neurologists working in Pakistan. This form was sent via email. RESULTS: For the patient survey, 250 patients or caregivers were contacted, of whom 194 responded. The median age of the patients was 10 years (IQR 6-14 years). The authors found that 74.2% (n = 144) of the patients were unaware of surgical options in MRE. Forty-eight (24.7%) patients/caregivers reported more than 1 seizure per month, and 29 (60.4%) of them were unaware of the surgical treatment. Seizures were disabling in 56.7% (n = 110) of the patients. Patients taking more antiepileptic drugs were significantly more likely to be aware of surgical options (p = 0.001). For the neurologist survey, only 6.6% (4/61) always discussed epilepsy surgery with MRE patients. Around half of the neurologists (n = 27, 44.3%) had never referred a patient for epilepsy surgery. However, 95.1% (n = 58) were aware of the underutilization of epilepsy surgery, and 67.2% (n = 41) believed that epilepsy surgery is underrecommended. Almost all neurologists (n = 60, 98.4%) believed that comprehensive epilepsy treatment centers are required in the country. CONCLUSIONS: These surveys demonstrated a major barrier in patient and neurologist awareness, in contrast to high-income countries where physician awareness is adequate but patient perceptions and stigmas are the main barriers. Addressing these barriers requires multifaceted, locally tailored approaches.

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