Wilson E, Sheng H, Mulkey N, Garg A, Camayd-Muñoz C, Douglass L. Social determinants of health in children with epilepsy; it’s not all about socioeconomic status. HPHR. 2021;34.
Research on how social determinants of health (SDOH) influence the health of children with epilepsy is limited, with most existing studies using markers of socioeconomic status (SES) instead of direct measures of SDOH such as housing and food insecurity. We conducted a search of peer-reviewed publications (Pub Med) (Appendix A) and examined the frequency with which housing, food insecurity, or other indicators of SES were associated with epilepsy-related outcomes. Out of a total of 46 articles found, only 12 examined factors not traditionally considered SES, such as housing and food insecurity. The majority of studies focus on secondary health outcomes, such as medication adherence, rather than primary outcomes, such as medical/healthcare utilization or epilepsy severity, which may be a better proxy to assess patient functioning and clinical outcomes. Emerging data suggests a significant association between food or housing insecurity and primary health outcomes in children with epilepsy, including higher frequency of healthcare utilization, as compared to children without these risks. Nonetheless, few published high quality studies directly examine the impact of food or housing security as independent SDOH on disease outcomes in children with epilepsy. With the goal of elucidating potentially modifiable risks influencing epilepsy outcomes, future research ought to include these and other specific SDOH.
Social determinants of health (SDOH) are defined by the World Health Organization as “conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels. The social determinants of health are mostly responsible for health inequities – the unfair and avoidable differences in health status seen within and between countries.”
Substantial research underscores the impact that unmet social risks have on varied child health outcomes. Disparities in epilepsy outcome by socioeconomic status (SES), often indicated by caretaker education status, household income, or type of medical insurance, is well established. However, little is known about the direct impact of other unmet specific social needs, such as housing and food insecurity, on the outcomes of patients with epilepsy. In the general pediatric population, food insecurity is associated with poorer overall health, delayed development, iron-deficiency anemia, and increased frequency of lifetime hospitalizations.1,2 Similarly, housing insecurity is associated with fair or poor child health, developmental delay, lower weight-for-age z scores as well as increased frequency of hospitalizations. 3,4
Identification of food and/or housing insecurity may impact children with epilepsy in a few ways that may lead to specific beneficial interventions. First, food or housing insecurity likely diminishes the capacity to maintain continuity of care with both primary care physicians and epilepsy specialists. Second, and a consequence of the first, is the inability to afford, obtain or maintain sufficient anticonvulsant medications. Recognition of the presence of these risks and their attendant effects on epilepsy care enhances the opportunities to intervene, including connecting children and families with vital resources such as food pantries and social services that can help secure stable housing, arrange for transportation to appointments, and establish mechanisms that will maintain a proper supply of medications. The lack of research in this area becomes clear when reviewing existing literature that explores the impact of SDOH on outcomes specific to children with epilepsy.
We conducted a literature search of studies on pediatric patients (birth to 18 years) with epilepsy that analyze SDOH including housing, food insecurity, income, education, employment, and general socioeconomic status. Using a PubMed search for epilepsy, children, and various SDOH (SES, food insecurity, housing insecurity) (Appendix A), we found 1,500 articles. We included studies on pediatric patients (birth to 18 years) with epilepsy that analyzed one or more of the following SDOH: housing, food insecurity, income, education, employment, and general socioeconomic status. We excluded articles that examined these SDOH as dependent variables or did not include an analysis of association between SDOH and epilepsy-related outcomes. After reviewing these abstracts, only 46 articles met inclusion criteria. Of those articles, only 12 assessed SDOH beyond traditional variables of SES, including type of neighborhood (urban vs rural), food insecurity, and housing insecurity. Some of these studies assessed both food and housing hardships. In total, six studies assessed the impact of neighborhood,5-10 four assessed the impact of housing hardship,11-14 and three assessed the impact of food insecurity on children with epilepsy.12, 16, 17 There was great variability in the methods of assessing potential confounding variables, but most studies utilized regression analyses controlling for age and gender. Other confounding variables inconsistently assessed for included method of delivery (vaginal vs c-section), gestational age, place of delivery (in a location with access to healthcare professional), duration of disease, and other medical comorbidities.
The majority of articles examining SDOH in patients with epilepsy focused on SES as an independent variable. While 15 articles directly measured SES using parental self-reported income, the rest estimated patients’ SES using factors such as caregiver education status, employment status, zip code-based statistics, or a combination of these variables. Of the 46 publications that assess SES, the majority focus on secondary outcomes (medication adherence) rather than seizure-related outcomes, and few considered other SDOH, such as housing and food insecurity.
The studies that assessed the impact of neighborhood on outcomes in children with epilepsy had varying results.5-10 Three of these studies assessed impact of neighborhood on medication adherence,5-7 two assessed impact of neighborhood on prevalence of epilepsy9,10 and one assessed neighborhood impact on access to neuropediatricians.8 Some of these studies suggested that outcomes did not differ for children living in a rural or urban area.5 Others identified either poorer outcomes in patients living in rural areas, citing that these patients are more likely to default on follow up appointments,6 or better outcomes in relation to medication adherence.7 Similarly, research surrounding the impact of neighborhood on incidence of epilepsy is contradictory with some studies suggesting that living in a socioeconomically depressed neighborhood is associated with increased incidence of epilepsy9 while other studies found no significant impact on epilepsy risk whether residence was urban or rural.10
When we assessed studies that narrowed research to housing hardship rather than type of neighborhood we found that studies primarily assessed population outcomes related to prevalence of epilepsy rather than individual outcomes related to disease burden. Three studies independently collected information on housing insecurity11-13 while one study extrapolated housing insecurity based on zip-code.14 Two studies assessed impact on prevalence of epilepsy11,12 one assessed relationship with psychosocial factors,13 and only one assessed impact on disease morbidity.14
Two studies suggested individuals living in less stable housing (rented housing or non-masonry type housing) had increased prevalence of epilepsy. 11, 12 Specifically, less secure living conditions were associated with a 3.5-fold increased risk of seizures compared to those in more secure living conditions.12 Two additional studies combined housing hardship with multiple other variables as an indicator of SES, making it difficult to determine the effect size of housing hardship on outcome measures.13, 14
Additionally, the studies we reviewed used varied measurements for medication adherence (e.g., medication possession ratios vs self-reported measures) and none of the studies utilized a validated measure of housing insecurity, limiting reliability and generalizability of the data. While there is clearly a link between housing insecurity and health outcomes, the research in sub-specialty populations, such as children with epilepsy, is sparse and ill-defined. Standardizing measures of housing insecurity in future research will help to elucidate its effect on outcomes in children with epilepsy.
We identified only three studies that considered food insecurity in children with epilepsy. 12,15,16 Only study assessed the relationship between food insecurity and prevalence of epilepsy12 while the other two studies examined the impact of food insecurity on quality of life.15,16
In 2017, 14% of families in the US with children with epilepsy reported food insecurity, with a higher prevalence in families with public health insurance.15 Furthermore, food insecurity was found to be more prevalent in African American families who have children with epilepsy than their white counterparts.15 Comparable to food insecurity, children in families who lacked access to clean water had a 2.5-fold increased risk of seizures .12 These studies had similar challenges with validity and generalizability found in the research surrounding housing; reports of food insecurity neither used validated measures nor assessed the impact on primary health outcomes in children with epilepsy. Food insecurity appears to affect care and outcomes for a substantial proportion of pediatric epilepsy patients and more research is needed to better understand its impact.
While a number of studies document the broad relationship between SES and epilepsy outcomes in children, a plethora of SDOH, not generally considered in traditional measures of SES, appear to impact overall child health in this population. Specifically, consideration of housing and food insecurity in research related to children with epilepsy likely will complement more traditional measures of SES in determining health outcomes, including medication adherence, prevalence of epilepsy, and epilepsy morbidity.
The mechanism that underlies the association between specific SDOHs and epilepsy outcomes is unclear, but may relate to enhanced sympathomimetic activity associated with stress that in turn may impact brain neurotransmitter activity either directly or through epigenetic mechanisms. 17-19 Alternatively, higher medical costs associated with epilepsy may increase the risk of developing social stressors. Future research will need to utilize validated screening tools that address specific SDOH and better define the relationship between the development of SDOH and morbidity of epilepsy if we are to understand the impact of a patient’s social environment on neurologic health and identify means of intervening.
As future research is being conducted, it is vital that health policy solutions aimed at supporting this vulnerable population are developed. Potential areas of intervention include advocating for additional government funding of supplemental food programs specifically for family that have children with epilepsy as well as expanding low-income housing options for medically complex families. The partnership of practical, time-sensitive public policy interventions and research to follow the impact of these interventions on health outcomes in children with Epilepsy is critical to ensuring these children have the most optimal environment to support their health needs.
(((“Epilepsy”[Mesh] OR epilepsy OR Epilepsies))) AND ((((((((((((“Social Determinants of Health”[Mesh] OR Social Determinants of Health)) OR (((housing insecurity OR housing instability OR unstable housing OR access to affordable housing)) OR “Housing/economics”[Mesh])) OR (((“Electric Wiring/economics”[Mesh]) OR energy insecurity) OR “Heating/economics”[Mesh])) OR (“Medication Adherence”[Mesh] OR Adherence, Medication OR Medication Nonadherence OR Nonadherence, Medication OR Medication Noncompliance OR Noncompliance, Medication OR Medication Non-Adherence OR Medication Non Adherence OR Non-Adherence, Medication OR Medication Persistence OR Persistence, Medication OR Medication Compliance OR Compliance, Medication OR Medication Non-Compliance OR Medication Non Compliance OR Non-Compliance, Medication))))) OR ((((“Socioeconomic Factors”[Mesh] OR Factors, Socioeconomic OR Factor, Socioeconomic OR Socioeconomic Factor OR Standard of Living OR Living Standard OR Living Standards OR Land Tenure OR Tenure, Land OR Inequalities OR Inequality)) OR (“Poverty”[Mesh] OR Indigents OR Indigent OR Indigency OR Low-Income Population OR Low-Income Populations OR Population, Low-Income OR Populations, Low-Income OR Low Income Population OR Low Income Populations OR Population, Low Income OR Populations, Low Income)) OR (“Poverty Areas”[Mesh] OR Area, Poverty OR Areas, Poverty OR Poverty Area OR Slums OR Slum OR Ghettos OR Ghetto))) OR (“Food Supply”[Mesh] OR Food Insecurity OR Food Insecurities OR Insecurities, Food OR Insecurity, Food)) OR (“Employment”[Mesh] OR Employment Termination OR Termination, Employment OR Labor Force OR Labor Forces OR Precarious Employment OR Employment, Precarious OR Marginal Employment OR Employment, Marginal OR Employment Insecurity OR Employment Insecurities OR Insecurity, Employment OR Child Labor OR Labor, Child OR Employment Status OR Status, Employment OR Status, Occupational OR Occupational Status OR Underemployment)) OR (“Educational Status”[Mesh] OR Educational Achievement OR Status, Educational OR Achievement, Educational OR Achievements, Educational OR Educational Achievements OR Educational Status, Maternal OR Status, Maternal Educational OR Maternal Educational Status OR Educational Status, Paternal OR Status, Paternal Educational OR Paternal Educational Status)) Filters: Child: birth-18 years
Elizabeth Wilson is a pediatric neurology resident physician at Boston Medical Center in the Boston Combined Residency Program. Her research has focused on the impact of social determinants of health on outcomes in children with epilepsy.
Heping Sheng is a graduating medical student from Boston University School of Medicine. She will be pursuing residency training in Neurology at Thomas Jefferson University.
Nat Mulkey (they/them) is a fourth year medical student at Boston University School of Medicine who matched into the University of Vermont’s combined child/adult psychiatry residency
Arvin Garg, MD, MPH is with A Professor of Pediatrics and Vice Chair of Health Equity at University of Massachusetts (UMass) Medical School and UMass Memorial Children’s Medical Center.
Cristina Camayd-Muñoz, MS is a public health researcher and program manager with the Division of Pediatric Neurology, Boston University School of Medicine.
Dr. Laurie M. Douglass, MD is an Associate Professor of Pediatrics and Neurology at Boston University School of Medicine and is Section Chief of Child Neurology at Boston Medical Center. Her interests include epilepsy in the developing brain and strategies to improve health outcomes for children and youth with epilepsy.