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Health and Healthcare Disparities in Pediatric Epilepsy in the United States: A Scoping Review
Karen L Skjei1, Christopher Beatty2, Sonal Bhatia3
1El Paso Center for Seizures and Epilepsy, El Paso, TX, USA.
Insights
Health disparities in pediatric epilepsy are unequally studied, with some groups like Sex and Race/Ethnicity well-represented, but others like Language/Immigration under-represented. Findings on disparities were often hidden within publications.
Area of Science:
- Pediatric Neurology
- Health Services Research
- Public Health
Background:
- Health disparities significantly affect pediatric epilepsy care.
- Previous literature summaries on this topic have been limited.
- Understanding existing data and knowledge gaps is crucial for improving care.
Purpose of the Study:
- To conduct a comprehensive scoping review of health disparities in pediatric epilepsy.
- To identify how information on disparities is reported in the literature.
- To pinpoint gaps in current knowledge regarding health disparities in this population.
Main Methods:
- A systematic scoping review adhering to PRISMA guidelines was performed.
- Peer-reviewed articles and gray literature were analyzed.
- Disparity populations (e.g., Sex, Race/Ethnicity, Socioeconomic Status) and outcomes (e.g., Quality of Life, Utilization, Mortality) were identified and data extracted.
Main Results:
- 769 unique disparity/equity findings were identified across 307 publications.
- Representation of disparity populations was unequal (p < 0.0001), with Sex and Race/Ethnicity most frequent, and Language/Immigration least frequent.
- Quality of Life/Psychological outcomes constituted 23% of findings; Utilization and Mortality/SUDEP showed the highest disparity percentages. Many disparity findings were not initially intended objectives and were not clearly presented in abstracts or discussions.
Conclusions:
- While Sex and Race/Ethnicity disparities in pediatric epilepsy are well-documented, Language/Immigration remains under-explored despite high disparity rates.
- Unequal investigation across health-related outcome categories was observed.
- Disparity findings were frequently difficult to locate within published articles, hindering accessibility and knowledge synthesis.
Objectives:
Health disparities impact epilepsy care in children. Previous efforts to summarize data in this population have been limited. This study sought to understand how this information exists in the literature and identify gaps in knowledge.
Methods:
A scoping review of peer-reviewed articles and gray literature was conducted using PRISMA guidelines. Disparity populations (e.g., Sex, Race/Ethnicity, Socioeconomic Status) and disparity outcomes (e.g., Quality of Life (QOL)/Psychological, Utilization, Mortality/Sudden Unexpected Death in Epilepsy) were identified. A finding was defined as a single result from a discrete statistical analysis of a specific clinical outcome by disparity population. Data extraction identified where this information existed in the literature and how it was reported.
Results:
A total of 307 publications revealed 769 unique disparity/equity findings. Disparity populations were unequally represented (p < 0.0001). Sex and Race/Ethnicity had the most findings while Language/Immigration had the fewest. Nearly a quarter of findings (23%) addressed QOL/Psychological outcomes. The highest percentages of disparities were found in the Utilization, Mortality/SUDEP, and Economic categories. Of the 204 publications reporting disparity findings, fewer than half actually intended to investigate disparities as one of their original objectives. Of the disparity findings identified in peer-reviewed articles, a third were not mentioned in the abstract and 20% were not addressed in the discussion.
Interpretation:
A comprehensive scoping review of health disparities in pediatric epilepsy found that specific disparity populations like Sex and Race/Ethnicity were robustly explored, while Language/Immigration was under-represented, despite a high rate of disparities. Health-related outcome categories were also unequally investigated. Disparity findings were often difficult to access within publications. ANN NEUROL 2024;95:733-742.
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