Abstract
AB082. Navigating barriers to epilepsy surgery: a national survey of patient and neurologist perspectives
Saqib Kamran Bakhshi1, Rabeet Tariq1, Mohammad Hamza Bajwa1, Fatima Gauhar2, Muhammad Bin Hammad1, Sijal Akhtar1, Muhammad Bin Nasir1, Farhan Arshad Mirza3, Syed Ather Enam1
1Section of Neurosurgery, Department of Surgery, Aga Khan University Hospital, Karachi, Pakistan;
2Vanderbilt University Medical Center, Nashville, TN, USA;
3Kentucky Neuroscience Institute (KNI), Department of Neurosurgery, University of Kentucky, KY, USA
Correspondence to: Syed Ather Enam, MD, PhD, FRCSI, FRCSC, FRCSG, FACS. Section of Neurosurgery, Department of Surgery, Aga Khan University Hospital, Sadium Road, Karachi, Pakistan. Email: ather.enam@aku.edu.
Background: Potential barriers to epilepsy surgery can be divided into two broad groups: reluctance of patients/caregivers and deficient knowledge of neurologists. Pakistan, in particular, faces an epilepsy surgery treatment gap of 70–94%. This study aimed to assess the knowledge and practice of neurologists and the knowledge of the patients diagnosed with epilepsy to identify the barriers to adequate provision of this modality in Pakistan.
Methods: We conducted a cross-sectional study comprising two surveys. Records of patients diagnosed with epilepsy at our hospital during 2.5 years were retrieved from the Neurophysiology database. The second form was designed for neurologists working in Pakistan. The questionnaires were disseminated via email to neurologists and phone calls to patients.
Results: In the patients’ survey, we obtained 194 responses from caregivers. The median age of patients was 10 years [interquartile range (IQR): 6–14 years]. We found that 74.2% (n=144) of patients were unaware of surgical options in medically refractory epilepsy (MRE). Therefore, most did not comment on it due to the limited information. Forty-eight patients (24.8%) reported more than 1 seizure per month, and 29 (60.4%) were unaware of the surgical treatment. Seizures were disabling in 88% (n=171) of patients. Patients taking more AEDs were significantly more likely to be aware of surgical options (P=0.001). In the survey from neurologists, only 6.6% (n=4) always discussed epilepsy surgery with MRE patients. Around half of the neurologists, 44.3% (n=27), had never referred a patient for epilepsy surgery. However, 95.1% (n=58) were aware of the under-utilization of epilepsy surgery, and 67.2% (n=41) believed that epilepsy surgery is under-recommended. Almost all neurologists (n=60; 98.4%) believe that comprehensive epilepsy treatment centers are required in the country.
Conclusions: In our survey, we found a lack of awareness in both patients and neurologists to be a major barrier. This contrasts the literature from developed or high-income countries, where physician awareness seems adequate, and stigmas associated with surgery seem to be the major barrier. Multifaceted approaches catered to local concerns are necessary to address these hindrances.
Keywords: Epilepsy surgery; knowledge gaps; treatment gaps; global neurosurgery
Acknowledgments
Funding: None.
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://cco.amegroups.com/article/view/10.21037/cco-24-ab082/coif). The authors have no conflicts of interest to declare.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013) and was approved by the Ethical Review Board of the Aga Khan University Hospital, Karachi, Pakistan (2022-7942-23287). Written informed consent was obtained from the patients.
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the noncommercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.
Cite this abstract as: Bakhshi SK, Tariq R, Bajwa MH, Gauhar F, Hammad MB, Akhtar S, Nasir MB, Mirza FA, Enam SA. AB082. Navigating barriers to epilepsy surgery: a national survey of patient and neurologist perspectives. Chin Clin Oncol 2024;13(Suppl 1):AB082. doi: 10.21037/cco-24-ab082
