Disparities across the pediatric epilepsy surgery journey: Referral, recommendation, and completion from a national
Madison M Berl1, Janelle Wagner2, Avery Caraway3
1Center for Neuroscience, Children's National Hospital, Washington, DC, USA.
Insights
Pediatric epilepsy surgery is underutilized. Inequities exist in referral and completion, particularly for Black youth and those with no visible lesion, highlighting the need for equitable access to epilepsy surgery evaluations.
Area of Science:
- Neurology
- Pediatric Epilepsy Surgery
- Health Equity
Background:
- Pediatric epilepsy surgery is a safe and effective treatment but remains underutilized.
- Social determinants of health (SDoH) significantly impact access to care and contribute to treatment disparities.
- Understanding inequities in the epilepsy surgery pathway is crucial for improving patient outcomes.
Purpose of the Study:
- To examine potential systemic inequities at three key stages of the epilepsy surgery pathway.
- To identify disparities in referral, surgical offer, and surgery completion among pediatric epilepsy patients.
- To inform strategies for achieving equitable access to epilepsy surgery.
Main Methods:
- Analysis of a prospective surgery database from the Pediatric Epilepsy Research Consortium (PERC).
- Inclusion of patients aged 18 years or younger with available sociodemographic data.
- Examination of disparities in (1) referral to Phase I evaluation, (2) surgical offer, and (3) surgery completion.
Main Results:
- The study cohort (n=1309) was predominantly male, White, non-Hispanic, and privately insured.
- While no significant differences in surgical offer based on race/ethnicity or sex were found, patients with structural lesions were more likely to be offered surgery.
- White patients were significantly more likely than Black patients to complete surgery (1.88 times).
- Underrepresented minority youth with negative MRI scans were less likely to be referred for surgical workup.
Conclusions:
- The patient population undergoing epilepsy surgery evaluation is not representative of the broader pediatric epilepsy demographic in the US.
- Disparities in epilepsy surgery access are evident, particularly at the referral stage for those without clear structural lesions.
- Targeted interventions are needed at the referral stage and potentially later points to ensure equitable access to epilepsy surgery for all children.
Objective:
Despite being safe and effective, surgery for pediatric epilepsy is underutilized. Social determinants of health (SDoH) are important to consider when examining this treatment gap. This study examined the potential systemic inequities at three different stages in the journey toward epilepsy surgery across the Pediatric Epilepsy Research Consortium (PERC).
Methods:
Any youth in the PERC prospective surgery database (≤18 years) was eligible and included if sociodemographic factors were also available. We examined if there were differences in disparity factors in: (1) referral to Phase I evaluation, (2) offering of surgery, and (3) completion of surgery.
Results:
Of 1309 patients, the majority were male (53%, p = .04), White (82.2%, p < .001), not Hispanic or Latino (84.3%, p < .001), and privately insured (56.3%, p < .001). Of the youth who were offered surgical treatment (n = 1103, 84.3%), there were no significant differences in race/ethnicity or sex. Those with a structural lesion were more likely to be offered surgery, and historically marginalized youth were more likely to have a lesion. Of patients who completed surgery (n = 927, 84.0%), White patients were 1.88 times (95% confidence interval [CI]: 1.14-3.04) more likely than Black patients to complete surgery (p = .01).
Significance:
Youth who began surgery evaluation are not representative of the demographics of those with epilepsy in the United States, with greater representation of White, non-Hispanic male individuals. In addition, youth who began surgery evaluation disproportionally have private insurance. At the next stage of offering surgery, there were no differences based on SDoH. However, there is evidence that underrepresented youth that were magnetic resonance negative were less likely to be referred for surgical workup and that Black youth were less likely to undergo surgery. Therefore, efforts to provide equitable opportunity for all youth with refractory epilepsy should be concentrated at the referral for surgery evaluation point of care; however, additional efforts are also needed at later stages.
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