2023/09/20 by AK Kharbat, Rolle, Myron, Richardson, Mark +2
#Medicine and Health Sciences #Social and Behavioral Sciences
paper · doi:10.17605/osf.io/nuvqf
Measuring racial disparity in epilepsy referral patterns for MGH patient populations The Effect of Race and Socioeconomic Factors on Pediatric Epilepsy Referral Patterns and Continuation of Care Myron Rolle, Deen Garba, Rachel McClellan, Andre Boyke, Varun Saravanan, Catherine Chu, Mark Richardson Introduction Epilepsy affects nearly 50 million people worldwide, with nearly 80% of the burden affecting those in low- and middle-income countries (LMICs) 1. Surgical treatment is both highly successful and cost-effective, yet many children fail to receive timely care 2–4. Timely referral to epilepsy surgery improves treatment quality and outcomes; however, it is frequently limited by referral patterns 5. Despite considerable evidence demonstrating the effectiveness of surgery for epilepsy in children, epilepsy surgery in children boasts only a 2% referral rate for evaluation 6. Previous studies have shown that parents cite concern regarding delays in getting specialty care, and there remains a reticence by health professionals to address barriers in cultural communication 7. Historically, time to surgery for pediatric epilepsy patients has been affected by socioeconomic status due to decreased access to specialist care, delays in referral, lack of transportation, and difficulty taking time off work 8. Access to insurance also remains critical, though universal insurance has not been shown to reduce disparities in access to epilepsy surgery 8. Factors such as medication adherence and the availability of prior imaging are also important to understand, as they frequently serve as shunts towards specialty services 9. For example, a survey of Michigan neurologists demonstrated that 20% of patients had to fail all anti-epileptic drugs to be considered medication refractory and would otherwise not be referred for sub-specialty care 10,11. Within the United States, there is evidence suggesting blacks and Hispanics are less likely to receive temporal lobectomy than non-Hispanic whites 12–14. There is an urgent need to understand the role clinical and socioeconomic factors, including race, income status, medications, zip code, parents in the household, comorbidities, and insurance status have on the management of pediatric epilepsy. This study aims to ascertain whether race and socioeconomic status impact surgical patterns, referral patterns and continuity of care for evaluation of pediatric epilepsy patients. [End 2022 Introduction] Updated methodology September 2023 (submitted by Hezekiah Branch): In this updated methodology, we will apply a causal inference framework to capture any racial disparities in the referral of epilepsy patients, accounting for relevant factors that can be further investigated as drivers for disparity. Our approach includes a confirmatory factor analysis (CFA) in addition to Bayesian modelling and additional generalized linear models (GLMs). In addition to standard model quality measures, we will rely on absolute and relative disparity metrics which are richly-defined in health disparity literature. Final steps will include the qualitative interpretation of model outputs, providing a discussion of practical steps for evaluating racial disparity in epilepsy patient populations.