Assessing Sudden Unexpected Death in Epilepsy (SUDEP),Mortality,and Suicide in Pediatric Epilepsy from the lens of Healthcare Disparities: Data From a Scoping Review

Introduction

Premature death, sudden unexpected death in epilepsy (SUDEP), and elevated suicide risk are the leading disease-related causes of mortality in epilepsy. These outcomes are often preventable through improved access to epilepsy care and management of neuropsychological comorbidities.^1–5 Social determinants of health (SDOH) such as gender, race, ethnicity, socioeconomic status (SES), geographic location, caregiver education, and insurance status, as outlined by the National Institute of Minorities Health and Health Disparities Research Framework are integral in shaping disease and mortality outcomes by influencing access to antiseizure medications and other treatments. ⁶

A 2024 scoping review on healthcare disparities in pediatric epilepsy highlighted the impact of SDOH on access to care and outcomes. ⁷ Of the 10 000 abstracts screened, 307 studies (containing pediatric-only or mixed-age/pediatric and adult data) were reviewed, identifying 769 unique findings related to disparities or equities. Most of these publications addressed access to epilepsy surgery or neuropsychological outcomes in relation to SDOH. However, a crucial outcome in pediatric epilepsy- SUDEP and/or mortality, was rarely studied. Recognizing this gap, especially with pediatric-only studies, we elected to focus on mortality-related outcomes in pediatric epilepsy in relationship to SDOH. We thus included pediatric and mixed-age studies in this scoping review aligning with the methodology of the original scoping review. Of the 307 papers published between 1977 and 2025, only 18 addressed mortality/SUDEP in epilepsy. Building on the 2024 scoping review and including studies that contained pediatric or mixed-age data, we examined specific SDOH variables in the context of mortality in pediatric epilepsy, emphasizing the limited literature on this topic and the need for further research.

Materials and Methods

The Pediatric Epilepsy Research Consortium (PERC) is a non-profit organization dedicated to advancing research in pediatric epilepsy across the United States. Currently, PERC includes more than 90 pediatric epilepsy centers and more than 400 members, including pediatric epileptologists, neuropsychologists, and clinician researchers, and is organized into 17 Special Interest Groups (SIGs).

The PERC Health Equity SIG conducted a scoping review to identify the existing literature highlighting disparities in the field of pediatric epilepsy. Details on the methodology are available in the article Health Disparities in Pediatric Epilepsy: Methods and Lessons Learned as well as the initial scoping review titled Health and Healthcare Disparities in Pediatric Epilepsy in the United States: A Scoping Review^7,8 (see Supplementary Appendix). Details on the inclusion and exclusion criteria are provided in the Supplementary Appendix. In summary, studies in English containing original, US-based pediatric-only (exclusively less than or equal to 21 years) or mixed-age (pediatric and adult) epilepsy disparity and equity data that was statistically analyzed by one or more disparity populations were included. The objective of the scoping review was to synthesize existing literature on disparities among diverse populations expanding on the National Institutes of Health (NIH)-designated “health disparity populations” (eg, race/ethnicity, gender/sexual orientation/gender identity, SES, health insurance status/type, regional/geographic residence, patient and/or caregiver education, English proficiency, and nativity/citizenship) and a range of outcomes (prevalence/incidence, healthcare access and utilization, adherence, epilepsy evaluation and diagnosis, epilepsy treatment and management, adverse events/complications, economic factors, quality of life/neuropsychological outcomes, epilepsy outcomes/severity, and mortality/SUDEP).^6,8 An important goal of this scoping review was to compile the span of pediatric epilepsy disparity and equity data from a broad range of peer-reviewed articles and gray literature with a variety of study designs. Thus, the members of the PERC Health Equity SIG chose the approach of a scoping review over a systematic review, which seeks to evaluate the best empirical evidence from a relatively narrow range of quality-assessed studies to answer a focused research question. ⁹ A finding was defined and counted as a single result from a discrete statistical analysis of a specific clinical outcome (in this case, SUDEP, mortality, or suicide) within a disparity population. A statistically significant finding was reported as disparity, whereas a nonsignificant finding was reported as equity. These definitions of “disparity” and “equity” were agreed upon by the authors of the initial scoping review during the study design. Because of this vast undertaking, the original publication was unable to provide a granular analysis of the causal relationships between specific SDOH and individual outcomes.

Given the importance of SUDEP/mortality for children with epilepsy and their families, the PERC Health Equity SIG chose to highlight in detail the current literature examining its relationship to SDOH. For the current scoping review, data were selected from the list of papers identified in the original scoping review—containing pediatric or mixed-age data—where “SUDEP” or “mortality” was assigned as a study outcome for all disparity populations. From the previously published scoping review, the authors (S.B., S.P., S.H.) identified a total of 18 publications from peer-reviewed journals and extracted data from 15 of these papers; 2 were excluded because the full text could not be retrieved, and 1 was an abstract. We categorized these papers reporting death associated with epilepsy as mortality (from causes other than SUDEP or suicide), SUDEP, and suicide.

The search used in the original scoping review was updated in May 2024, as described by Skjei et al, ⁷ and again in July 2025. Because of the large number of results, the original search was modified to include the following terms in PubMed: (“Health Status Disparities” [MeSH Terms] OR “Healthcare Disparities” [MeSH Terms] OR disparit*[tiab] OR inequalit*[Title/Abstract] OR inequit* [Title/Abstract] OR equity [tiab] OR equities [tiab]). The [tiab] field tag limited results to terms appearing in the title or abstract. These same terms were modified for and added to the searches in the following databases: APA PsycINFO (EBSCOhost), CINAHL Plus with Full Text (EBSCOhost), Cochrane Library (Wiley), Dissertations & Theses Global (ProQuest), Embase (Elsevier), and Web of Science (not included in the July search). A health sciences librarian collaborated on the search strategy and conducted the search. The full search strings, including search dates and filters for each database, are included in the Supplementary Appendix.

The literature screening process was conducted using Covidence (Figure 1). Abstracts and full publications were reviewed independently by at least 2 reviewers to determine if they met the previously established inclusion criteria. ¹⁰ The modified and updated search in May 2024 returned 186 results across all databases (Figure 1). Of these, 46 duplicates were removed, and then 140 were screened for eligibility, resulting in a full review of 6 papers. The 6 papers were subsequently excluded because the outcomes did not include SUDEP or mortality (n = 3), data elements did not include SDOH (n = 1), or the study cohort did not involve epilepsy (n = 1) or pediatric patients (n = 1). The search in July 2025 returned 110 results across all databases, which were screened for eligibility, resulting in a full review of 17 papers (Figure 1). Fourteen papers were subsequently excluded because they were review articles (n = 4), did not include SUDEP or mortality outcomes (n = 6), or had no pediatric subjects (n = 4). Three studies from the updated search met the inclusion criteria.

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Figure 1.

PRISMA flow diagram of the updated literature reviews. Searches were conducted using a consistent strategy, building on prior scoping review. The original scoping review (data extracted through November 2022) included 307 studies, of which 15 included SUDEP, suicide, or mortality outcomes (not shown). (A) An updated search in May 2024 identified 186 articles; 46 duplicates were removed, and 140 studies were screened. Six full-text articles were reviewed and were excluded for the following reasons: did not include SUDEP, suicide, or mortality outcomes (n = 3); lacked SDOH data elements (n = 1); or did not involve pediatric patients (n = 1) or patients with epilepsy (n = 1). No studies from the May 2024 search met inclusion criteria. (B) A subsequent updated search in July 2025 identified 110 articles; 17 underwent full-text review. Fourteen articles were excluded for the following reasons: review articles (n = 4), did not include SUDEP, suicide, or mortality outcomes (n = 6), or did not include pediatric populations (n = 4). Three studies from the July 2025 search met inclusion criteria, yielding 18 total studies across the original (n = 15) and updated (n = 3) reviews.

Results

Eighteen peer-reviewed publications were identified across the original (n = 15) and updated (n = 3) reviews that assessed “mortality” or “SUDEP” outcomes in disparity populations. Eight papers documented general mortality in epilepsy without specifically mentioning SUDEP. Seven studies reported on SUDEP; of those, 2 assessed cardiac arrhythmias as an indirect marker for SUDEP, and 3 evaluated suicide in epilepsy. Thirteen studies analyzed mixed adult and pediatric populations, whereas the remaining 5 focused exclusively on pediatric patients. Among the pediatric-specific papers, 3 addressed mortality, 1 assessed SUDEP, and 1 examined suicide. There were a total of 40 unique findings, 31 disparity and 9 equity findings. The most frequently reported SDOH finding was gender (n = 21), whereas other factors such as race/ethnicity (n = 11), SES (n = 3), geography (n = 3), and education (n = 2) were also noted. Table 1 summarizes the disparity and equity findings related to mortality, SUDEP, and suicide.

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Table 1.

Disparity and Equity Findings Related to Mortality, SUDEP, and Suicide in Persons with Epilepsy.^a

Disparity Factor	Mortality	SUDEP	Suicide	Total (n = 40)
SDOH
Gender (n = 21)
Disparity	5	8	4	17
Equity	1	1	2	4
Race/ethnicity (n = 11)
Disparity	6	3	1	10
Equity	0	0	1	1
SES (n = 3)
Disparity	1	1	0	2
Equity	1	0	0	1
Geography (n = 3)
Disparity	3	0	0	3
Equity	0	0	0	0
Education (n = 2)
Disparity	0	0	0	0
Equity	0	0	2	2
Total
Disparity	14	12	5	31
Equity	3	1	5	9

Abbreviations: SDOH, social determinants of health; SES, socioeconomic status; SUDEP, sudden unexpected death in epilepsy.

Disparity factor: mortality, SUDEP, suicide; SDOH: gender, race/ethnicity, SES, geography, education.

N was counted as a single result from a discrete statistical analysis within each publication. A statistically significant finding was counted as a disparity, whereas a nonsignificant finding was counted as equity.

Discussion

This scoping review underscores the emerging yet still limited research on SDOH in relation to SUDEP, mortality, and suicide among epilepsy patients. Despite the critical significance of these outcomes, only a handful of studies have specifically examined the role of SDOH, mostly gender. Even fewer address the impact of SDOH in children (only 5 studies address mortality outcomes in the pediatric age group) highlighting the lack of standardized SDOH captured in pediatric epilepsy-related mortality outcomes. Thus, in accordance with the methodology of the original scoping review, we analyzed studies with pediatric-only and mixed-age (both pediatric and adult) data, as our focus was primarily on looking at mortality-related outcomes in pediatric epilepsy. Standardized SDOH for pediatric-specific epilepsy research is an urgent need.

Mortality: Studies assessing mortality in epilepsy reveal mixed and context-dependent patterns. In pediatric SE, SES showed no impact on mortality, although children from lower-opportunity neighborhoods required more intensive interventions.^11,17 In contrast, national studies consistently highlight enduring disparities by gender, race, and geography. Males, individuals from racial minority groups (eg, non-Hispanic Black/African American and American Indian/Alaska Native populations), and those living in nonmetropolitan areas face higher mortality, with evidence that these gaps have widened over the past 2 decades.^16,18 These findings suggest that although short-term outcomes such as in-hospital survival may appear equitable, broader population-level data underscore persistent inequities shaped by both biological vulnerability and SDOH. SDOH variables may lead to socioeconomic barriers adversely impacting timeliness of diagnosis, therapeutic interventions, and treatment adherence, thus indirectly influencing seizure control and subsequently mortality-related outcomes. The variability in findings may, in part, stem from insufficient publications on this topic, which may limit the ability to establish consistent patterns and contribute to the mixed results observed.

SUDEP: SUDEP remains the leading cause of premature epilepsy-related mortality, and emerging evidence highlights the influence of SDOH on its risk. The most consistent finding across the literature is the excess risk in males, confirmed in pooled analyses showing a ∼1.4-fold increased risk ²⁰ and echoed in autopsy series where up to 70% of SUDEP decedents were men.^20,21 Although gender-related biological factors, such as arrhythmia susceptibility, may partly explain this disparity, gender-related differences in treatment adherence or care access may also contribute. Racial disparities are also evident, with Black/African American and other non-White individuals experiencing disproportionately higher SUDEP incidence, in some reports more than twice that of White individuals.^23,30 Importantly, SES has been linked to marked differences, with SUDEP rates more than 2 to 3 times higher in the lowest SES quartiles compared with the highest, ²³ suggesting that structural inequities and barriers to consistent, high-quality epilepsy care remain major contributors. Despite the heterogeneity in how SUDEP was identified across these studies, the findings underscore the need to view SUDEP not only through a clinical and biological lens but also as a public health equity issue. Addressing modifiable SDOH factors, such as access to affordable medications, continuity of specialized care, and culturally responsive education, will be critical for reducing preventable epilepsy deaths and narrowing persistent disparities.

Suicide: Suicide risk, a major contributor to epilepsy-related mortality, was assessed in both adults and children. Pediatric studies examining suicide risk and self-injurious behavior were scarce and showed trends toward higher suicidal ideation in females with epilepsy, but differences were not statistically significant, likely because of limited power to detect significance in this outcome. ²⁹ In adults, suicide risks were associated with factors including social isolation and relationship status.^27,28 Studies are warranted to assess these risks in children with epilepsy, especially given that in the general population, suicide attempts are more common in females, whereas completed suicides are more common in males. ³⁰

Overall, this updated and detailed review aligns with findings from the original scoping review by Skjei et al, ⁷ which identified substantial gaps in the pediatric epilepsy disparities literature, particularly related to mortality and SUDEP. Standard inclusion of SDOH data elements in population-based registries and linkage of routinely collected health care data to mortality endpoints could help clarify complex SDOH relationships and inform prevention strategies. ³⁰ Currently, SDOH data elements are rarely adequately captured in pediatric epilepsy research. ⁷ The lack of SDOH inclusion restricts comprehensive assessment and limits the ability to perform multivariate analyses of covariates (such as SES, race, or insurance status) that may influence epilepsy outcomes. The use of a set of common data elements for SDOH in pediatric epilepsy could facilitate structured and consistent data collection, enable comparisons across studies, promote equity-focused research, and improve outcomes. ³¹

This review has several limitations. As a scoping review, it was designed to capture the breadth of existing literature. Thus, quantitative meta-analyses, formal assessment of methodologic and/or study quality, or risk bias of included studies were not conducted. Variability in study designs, populations, and outcome measures limited direct comparison across studies. In accordance with the original scoping review, we defined terms such as disparities and equities to understand the findings of these studies; this categorization may have oversimplified more complex relationships with SDOH. Although statistically nonsignificant findings were reported as “equity” for this scoping review, we caution about interpreting these findings as not being indicative of “true” disparities. Few studies included pediatric subjects, and most did not systematically collect or report SDOH variables, restricting interpretation, intersectional analyses, and the ability to identify in-depth mechanisms by which SDOH variables may influence epilepsy-related mortality. In accordance with the NIH framework, we used the term “gender” in this review, and although gender was the most commonly reported variable, studies did not differentiate between “sex,” “gender,” and other terms that capture sexual identity.^6,8 We also recognize that gender disparities may be somewhat ambiguous as a gender difference may be inherent to a certain epilepsy syndrome (eg, epilepsy with eyelid myoclonia is more common in girls). ³² Additionally, differences in how mortality and SUDEP were defined and ascertained across studies may have introduced bias. Finally, the literature in this review showcased studies only from within the United States and therefore its findings cannot be generalized to other health care systems abroad. However, this scoping review provides a comprehensive synthesis of current evidence and identifies critical gaps in the literature. Future research should prioritize the integration of common data elements that capture detailed SDOH, such as in standardized registries and in prospective cohort studies, the inclusion of pediatric populations and the intentional enrollment of diverse cohorts even across the globe to ensure that epilepsy research reflects the full spectrum of affected individuals, not only in high-income but also in low- and middle-income countries. Such approaches are critical to advancing a more comprehensive and equitable understanding of epilepsy-related mortality, including SUDEP, and to informing interventions that meaningfully address health disparities.

Conclusion

Collectively, the current literature reveals meaningful patterns in epilepsy-related mortality across SDOH categories. Pediatric-specific data remain especially limited, despite known disparities in diagnostic and therapeutic pathways, underscoring the need for more robust, intersectional, and systematic research in this age group. Most studies have disproportionately emphasized individual demographic variables, most notably, gender, while overlooking other nuanced and intersecting roles including race, ethnicity, SES, education, and geographic location. Thus, improvement in SDOH data collection, such as incorporating common data elements in research, will aid in understanding the breadth and depth of SDOH variables contributing to epilepsy-related mortality. Future research linking SDOH variables to longitudinal clinical studies may be essential in identifying modifiable risk factors for mortality in pediatric epilepsy.

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