The Economic Burden of Epilepsy in Bhutan

Summary

Objective:

To assess the economic impact of epilepsy in Bhutan, a lower-middle-income country with a universal health care system, but with limited access to neurological care.

Methods:

A cross-sectional survey was conducted of patients with epilepsy receiving care at Jigme Dorji Wangchuk National Referral Hospital from January to August, 2016. Data were collected on clinical features of epilepsy, cost of care, impact of epilepsy on school or work, and household economic status of participants and matched comparisons (a sibling or neighbor from a separate household without epilepsy).

Results:

A total of 172 individuals were included in the study (130 adults and 42 children). One-third of adults and 20 (48%) children had seizures at least once per month. Mean annual direct out-of-pocket costs for epilepsy care was 6,054 BTN (91 USD), of which transportation formed the greatest portion (53%). Direct costs of epilepsy were an average of 3.2% of annual household income. Adults missed 6.8 ± 9.0 days of work or school per year on average, and children missed 18.6 ± 34.7 days of school. Of adult participants, 23 (18%) abandoned employment or school because of epilepsy; among school-age children, seven (18%) stopped school because of epilepsy. Households with a person with epilepsy had lower monthly per-person income (6,434 BTN) than comparison households without epilepsy (8,892 BTN; p = 0.027).

Significance:

In this lower-middle-income country, despite universal health care services, households of people with epilepsy face a significant economic burden. Cost of transportation for epilepsy care contributes a major proportion of the direct cost burden. Indirect costs, including negative effects on school achievement and employment, disrupt the economic potential of people with epilepsy in Bhutan. Household economic well-being is impacted by the direct and indirect costs of epilepsy.

Introduction

While epilepsy is common globally, developing countries bear a disproportionate share of the burden of epilepsy. Greater than 85% of the global burden of epilepsy is estimated to occur in low- and lower-middle-income countries (LLMICs), although these countries represent just under half of the world’s population.^1–3 Access to treatment for epilepsy in LLMICs is generally limited, with more than 75% of epilepsy patients in most low-income countries and more than 50% of epilepsy patients in middle-income countries not receiving medical therapy.⁴

Epilepsy – particularly if not effectively treated – places a large physical and emotional burden on patients, and can also affect the economic well-being of patients and families, through the cost of medical care and difficulty pursuing income-generating activities. Prior reviews have indicated that the costs of epilepsy may vary with the severity of disease, time since diagnosis, efficacy of antiepileptic drug treatment, and health insurance coverage.^5,6

Several recent studies from LLMICs, including China,⁷ India,⁸ Cameroon,⁹ and Nigeria,^10,11 have documented the high direct costs of epilepsy, with out-of-pocket expenditure often accounting for a major proportion of a household’s income. Additionally, indirect costs of epilepsy place a large burden on families and society, such as studies from Uganda¹² and Nigeria¹⁰ that found that many school-aged children with epilepsy were not attending school (43% in Uganda, 13% in Nigeria). A recent systematic review found that insufficient data are available on the economic impact of epilepsy in LLMICs or the effect of health system structures on the burden of epilepsy in these settings.⁶

In order to assess the economic burden of epilepsy in LLMICs, we developed and implemented a survey for people with epilepsy (PWE) and their families in Bhutan, a lower-middle income country. The survey included the direct costs of care, the indirect costs of illness such as missed school or employment, and the interaction between seizure control and economic well-being. Bhutan provides a useful setting for an analysis of the economic burden of epilepsy; with a system of universal health care, medical services in Bhutan are generally free, but there are no neurologists or specialized care for epilepsy available in the country. We use the collected survey data to assess the impact of universal health care on costs for PWE, as well as the effect of inadequate access to neurological care.

Methods

Setting

Bhutan, home to approximately 774,800 people,¹³ is located in the Himalayan Mountains, bordered by India and China. Bhutan is primarily rural (61% of the population),¹³ and Buddhism, the major religion, is practiced by approximately 75% of the population.¹⁴ Bhutan had a gross national income per capita of $2,370 in the year 2015.¹³ While the total unemployment in Bhutan was low (2.9%) in 2013, youth unemployment was 9.6%, with particularly high youth unemployment in urban areas (22.8%).¹⁵

Study Location

The Jigme Dorji Wangchuk National Referral Hospital (JDWNRH), located in the capital city of Thimphu, is the tertiary referral center serving all 20 districts of Bhutan, and is the country’s largest hospital, caring for about 13,000 patients per year.¹⁶ Providers at JDWNRH include about 95 doctors and dentists, 398 nurses, 85 laboratory technologists, 34 radiology technicians, and 29 physiotherapists, among other professionals (D. Nirola, personal communication, 2017).

Bhutan has a universal health care system that provides medical care, medications, and diagnostic tests free to patients at all hospitals and basic health unit facilities for Bhutanese citizens. The availability of neurological care for epilepsy patients in the country remains extremely limited, with no practicing neurologist and no EEG services available.

As there are no available neurology services, PWE presenting to JDWNRH for epilepsy care are cared for by psychiatrists and psychiatry assistants (for adults) and general pediatricians. Some patients may also receive epilepsy care from army hospital facilities, general practitioners, local health centers, and traditional healers. According to the Ministry of Health, there were 1559 cases of epilepsy in Bhutan in 2015.¹⁶ That same year, 67 new epilepsy patients were seen by the psychiatry clinic at JDWNRH that year (D. Nirola, personal communication, 2017), although some individuals with epilepsy may not access specialized care at JDWNRH.

Computed tomography (CT) scan and magnetic resonance imaging (MRI) were available at the JDWNRH. Standard laboratory services were available in multiple locations in the country, but notably tests for antiepileptic drug (AED) levels were not available.

Study participants

The target population for the study was PWE seen at JDWNRH. While PWE receiving care at JDWNRH yield from all parts of Bhutan, there is likely lower representation of PWE from more distant regions of the country.

Ethics

This study received approval from the Partners Healthcare Institutional Review Board as well as the Research Ethics Board convened by the Bhutanese Ministry of Health. All participants provided written, informed consent; in the case of illiteracy, forms were read to subjects and participants provided thumbprints to indicate consent. For PWE under 18 years old, the parent or guardian provided written consent and answered the survey questions about the child participant.

Recruitment and Enrollment

Participants were individuals of any age who presented to the JDWNRH Department of Psychiatry’s outpatient clinic for epilepsy care between January and August 2016. Recruitment occurred via two methods: (1) PWE presenting for their regularly scheduled epilepsy appointments were asked to participate, and (2) additional PWE were selected from the registry and contacted to participate in a separate study through the Bhutan Epilepsy Project on the diagnostic utility of routine EEG in a low-resource setting; these participants were asked to participate in the economic impact survey on the day of their EEG study.

For the purposes of this study, epilepsy was defined as having two or more unprovoked seizures greater than 24 hours apart,¹⁷ with the diagnosis confirmed by a study physician via clinical history. Inclusion criteria were patients of any age with epilepsy who received care at JDWNRH. All patients with a history of only one seizure, seizure only in the presence of fever, or who were determined through clinical assessment by a research team neurologist to have a history consistent with psychogenic non-epileptic events, syncope, or other non-epileptic events were excluded.

Survey interviews

Surveys were administered in the language of the participant, either English or Dzongkha, by investigators and trained research assistants. Questions included demographic and clinical information, costs of epilepsy care, school attendance or employment, and household income, expenses, and assets. Survey questions are available in Appendix 1.

Comparison households

In order to identify differences in measures of economic well-being between households with and without a person with epilepsy, each participant was asked to identify a sibling or friend living nearby, who were then used for matched comparisons. The sibling or friend must live in the same town or city as the participant, but in a separate household. The comparison household must not include any individual with epilepsy. These comparison households were therefore matched for geographic region, urban versus rural setting, and additional cultural factors that may influence socioeconomic status. Participants were asked questions about the demographic information and household economic status (including household assets, income, and expenses) of the comparison household they selected.

Data Collection and Analysis

Data were collected by research staff from the Bhutan Epilepsy Project, who were unaffiliated with JDWNRH. Data were entered into a RedCap database¹⁸ using tablets. All analyses were conducted using Stata version 14 (College Park, TX). For currency conversion, the rate of 1 USD = 66.4 Bhutanese Ngultrum as of May 1, 2016 (approximately the midpoint of the study period) was used (www.exchangerates.co.uk).

Epilepsy Assessment

To assess disease severity, participants reported the frequency of seizures over the prior month and the prior year. In addition, participants provided detailed accounts of their symptoms and events, which allowed for the identification of any additional seizure types that were not initially reported by the participants. Any such events that were consistent with seizure were included in the analysis of seizure frequency. Epilepsy duration was counted from the time of first seizure onset until the time of the study interview, excluding childhood febrile seizures.

Economics Evaluation

To assess out-of-pocket direct costs of epilepsy, subjects (or parents/guardians in the case of child participants) provided self-reports of number of visits to and payments for outpatient clinics (both to local health centers and the epilepsy clinic at the main hospital), number of days and daily cost of inpatient hospitalizations, cost of medications, diagnostic tests performed and payments for these tests, and round-trip transportation to clinics. Costs of traditional medicine or other alternative therapies were not included in this study. Participants were asked to recall these health expenditures over the prior year; all reported payments were out-of-pocket costs only.

Indirect costs included days of work or school missed by the person with epilepsy per year due to epilepsy, as well as days of work missed by others in the family because of caring for the individual with epilepsy. School-age was defined as age 6 through 17 years, in line with the standard age of school entry and secondary school graduation for children in Bhutan. Employment status was assessed; for this purpose, individuals who served as monks or nuns were considered to be employed.

Participants reported monthly household income and total expenses for all members in the household. For individuals who lived in a monastery, household size was assumed to be one (the participant only). For household socioeconomic status, information on a list of household characteristics was collected, and converted into a single score using principal component analysis.¹⁹ Variables used in the wealth analysis included household income, household expenses, food expenses, items at home (including running water, toilet or latrine, television, and refrigerator), animals at home (including cattle/oxen, chickens, and goats), bank account usage, and home ownership. Households were then classified into five wealth quintiles based on the first principal component score. Differences in socioeconomic outcomes between participants and comparisons were assessed using paired t-test.

Multivariable linear regression analysis was conducted to assess the relationship between potential explanatory variables – including age, sex, geographic location, presence or absence of epilepsy, severity of disease (seizure frequency, number of medications, duration of epilepsy), and distance to health facilities – and economic outcomes such as medical costs, household income, and school attainment among both participant and comparison households. A backwards, stepwise approach was used to select covariates with a threshold of p < 0.05.

Results

Participant characteristics

A total of 172 individuals with epilepsy were included in the study. Participants included 130 adults, (46% male), and 42 children, (57% male). As shown in Table 1, participants’ age ranged from 6 months to 78 years old.

Table 1:

Demographic and clinical characteristics

		Adults (n = 130)		Children (< 18) (n = 42)
		n	%	n	%
Sex	Female	70	54	24	57
	Male	60	46	18	43
Age (years)	≤ 12	--	--	17	40
	13–17	--	--	25	60
	18–30	95	73	--	--
	31–60	29	22	--	--
	> 60	6	5	--	--
Community size (number of people)	< 1,000	32	25	8	19
	1,000 to < 10,000	30	24	16	38
	10,000 to < 100,000	13	10	3	7
	≥ 100,000	52	41	15	36
Employment	Student	30	23	29	69
	Employed	56	43	1	2
	Household work	7	5	--	--
	Unemployed or out of school	37	28	12	29
Duration of epilepsy at time of enrollment (years)	< 1	8	6	8	19
	1–5	48	37	17	40
	6–10	37	28	6	14
	> 10	37	28	11	26
Time from symptom onset to diagnosis (years)	< 1	64	52	25	64
	1–2	33	27	7	18
	3–5	17	14	2	5
	> 5	10	8	5	13
Seizure frequency	Remission (no seizures in ≥ 1 year)	23	18	2	5
	< 1 seizure per month	66	51	20	48
	1–3 seizures per month	13	10	5	12
	1–6 seizures per week	22	17	8	19
	Daily seizures, mean	6	5	7	17
Number of anti-seizure medications presently used	None	6	5	5	12
	1	96	74	31	74
	2	24	18	5	12
	≥ 3	4	3	1	2
Travel time to local health center	< 30 minutes	17	43	7	54
	30 minutes to 1 hour	16	40	1	8
	> 1 to 4 hours	5	13	4	31
	5 hours to 1 day	2	5	--	--
	2 to 3 days	--	--	1	8
Travel time to main hospital/epilepsy clinic (JDWNRH)	< 30 minutes	53	42	14	35
	30 minutes to 1 hour	22	17	6	15
	> 1 to 4 hours	27	21	9	23
	5 hours to 1 day	21	17	8	20
	2 to 3 days	4	3	3	8

Rural and urban community backgrounds and employment status can be found in Table 1. Of note, 67 participants (40%) lived in urban areas ≥100,000 people (generally, neighborhoods of the capital city Thimphu). Additionally 37 (28%) adults were unemployed, and nine (21%) children were of school age (age 6 or older) but not in school.

Epilepsy characteristics

The average duration of epilepsy since symptom onset among adult participants was 8.0 years (SD: 7.1 years), while child participants had an average epilepsy duration of 5.9 years (SD: 5.3 years). Participants had an average delay of 1.8 years (adult) or 1.5 years (child) between seizure onset and diagnosis.

Seizure frequency and antiepileptic medication usage are depicted in Table 1. Of note, just 23 (18%) adults and two (5%) children had well-controlled epilepsy with no seizures in the prior one year. About one-third of adults and almost half of children had seizures at least once per month, of whom 28 (22%) adults and 15 (36%) children had at least weekly seizures. The majority of participants (about three-quarters of both adult and child participants) were taking one antiepileptic medication, and 20% took multiple medications.

Direct costs of epilepsy

On average, participants visited their local health center for epilepsy 6.1 ± 4.8 times during the year, and visited the epilepsy clinic at the main referral hospital 5.7 ± 4.7 times per year. Out-of-pocket costs for these outpatient visits (excluding transportation) averaged 1,572 BTN per year (24 USD; range 0 to 72,000 BTN). Twenty-three (13%) participants were hospitalized in the prior year, however only one participant reported having to pay out-of-pocket costs for the hospitalization (98,000 BTN, 1475 USD). While 155 (90%) participants did not pay any out-of-pocket costs for medications, among participants who did pay for medications, cost of medications for one year averaged 5,265 BTN (79 USD; range 120 to 20,000 BTN). For epilepsy-related diagnostic testing, 44 (26%) participants had an MRI in the past year, 6 (3%) had a CT scan, nine (5%) had an EEG, and 18 (10%) underwent blood tests. Just seven (4%) participants reported out-of-pocket costs for diagnostic testing in the prior year, which averaged 3957 BTN (60 USD; range 700 to 11,000 BTN). Although health services in Bhutan are normally provided free of charge to the patient through the public system, some individuals reported receiving care from private providers or traveled outside of the country for care.

Among participants who visited a local health center for epilepsy, almost half lived less than 30 minutes from the center. For transportation to the epilepsy clinic at the main hospital, 67 (40%) participants traveled less than 30 minutes to the hospital, while 36 (22%) participants traveled at least five hours (up to two to three days) each direction. Out-of-pocket costs for transportation to and from clinic or hospital visits for epilepsy care averaged 3,231 BTN (49 USD) per year.

The mean total direct out-of-pocket cost for epilepsy per year (Table 2), including outpatient visits, hospitalizations, medications, diagnostic tests, and transportation, was 6,054 BTN (91 USD; range 0 to 127,000 BTN). Of this average total cost, transportation costs accounted for the largest component (53%). On average, direct out-of-pocket costs of epilepsy accounted for 3.2% of yearly household income. Transportation costs alone accounted for an average of 1.7% of yearly household income. Several households were outliers, suffering a particularly high cost of medical care, or for whom out-of-pocket costs accounted for a large percentage of household income (Figure 1). There were 22 households that spent 5% or greater of household income on direct costs of epilepsy (Figure 2); of these households, transportation accounted for an average of 56% of their direct costs.

Table 2:

Direct costs of epilepsy –annual out-of-pocket epilepsy-related costs per patient in BTN (1 USD = 66.4 BTN as of May 1, 2016)

	Median	IQR	Mean	Range
Outpatient visits	0	0	1,572	[0 – 98,000]
Hospitalization	0	0	570	[0 – 72,000]
Medications	0	0	520	[0 – 20,000]
Diagnostic tests (MRI, CT, EEG, blood tests)	0	0	161	[0 – 11,000]
Transportation	1,220	3,520	3,231	[0 – 48,000]
Total	1,960	5,180	6,054	[0 – 127,800]

On multivariate linear regression analysis (Appendix 2), among participants with epilepsy, a higher number of anti-seizure medications (Coef: 6,917; p < 0.001), greater distance to the main hospital (Coef: 5,268; p = 0.015), and higher patient age (Coef: 261; p = 0.003) were associated with increased annual direct costs of epilepsy.

Indirect costs of epilepsy

Adults who worked or attended school (including university) within the prior year missed, on average, 6.8 ± 9.0 days of work or school per year because of epilepsy, while children who had attended school within the prior year missed an average of 18.6 ± 34.7 days of school (Table 3). Family members of adult participants missed an average of 7.1 ± 34.0 days of work per year because of caring for the individual with epilepsy, while family members of child participants missed an average of 16.5 ± 33.1 days. Among adult participants, 23 (18%) had stopped work or school entirely because of their seizures. Of the 38 children 6 years of age or older, seven (18%) had withdrawn from school because of seizures.

Table 3:

Indirect costs of epilepsy – work or school missed by patient or adult family members because of epilepsy

	Adults	Children (< 18)
Days of work/school missed per year (mean ± SD)	6.8 (± 9.0)	18.6 (± 34.7)
Days of work missed by other family members per year (mean ± SD)	7.1 (± 34.0)	16.5 (± 33.1)
Person with epilepsy stopped work/school because of seizures (number, % of total)	23 (18%)	7 (17%)

A multivariate linear regression model (Appendix 2) of participants with epilepsy and comparisons revealed that, when controlling for the presence of epilepsy, higher age (Coef: −0.026; p < 0.001) and higher frequency of seizures in the past month (Coef: −0.227; p = 0.011) were both statistically significant predictors of lower levels of school attainment.

Socioeconomic status in households with versus without PWE

Median monthly household income (total combined income of all household members) was 25,000 BTN (377 USD), IQR 25,000 BTN (377 USD). The median monthly income per person in the household was 5,000 BTN (75 USD), IQR 4,500 BTN (68 USD). Compared to households of matched siblings or friends without epilepsy (Table 4), households of participants with epilepsy had lower per-person monthly household income (6,434 BTN [97 USD] vs. 8,892 [134 USD], p = 0.027). There was no significant difference in wealth quintile (3.02 in households with epilepsy vs. 3.01 in households without epilepsy, p = 0.871).

Table 4:

Household wealth comparison – households of individuals with epilepsy vs. comparison households (1 USD = 66.4 BTN as of May 1, 2016)

	Affected household mean (BTN)	Comparison household mean (BTN)	P-value
Total combined monthly household income of all members	29,185	37,192	0.099
Per-person monthly household income	6,434	8,892	0.027
Wealth Quintile (mean)	3.02	3.01	0.871

Stepwise multivariate linear regression analysis (Appendix 2) revealed that, when controlling for town size, there was a significant association between having a PWE in the household and a lower per-person household income (Coef: −2,607; p = 0.027).

Discussion

Despite the availability of universal health care, people with epilepsy in Bhutan experience a high economic burden. Our major findings are threefold. First, most people with epilepsy in Bhutan receive health services at low to no out-of-pocket cost, reflecting the country’s health policies. Second, despite this, many families still spent a notable proportion of household income on care for the person with epilepsy, with transportation costs alone accounting for an average of 1.7% of household income. Finally, in this environment where control of epilepsy was often poor, participants reported high indirect costs of epilepsy, including major negative impacts on school attendance and employment.

Compared to estimates of annual direct out-of-pocket costs in other LLMICs, including in India in 1998 (93 USD per patient),⁸ and in the past decade in China (372 USD per patient)⁷ and Nigeria (163 USD per patient in one study,¹¹ 288 USD per patient for medications alone in another¹⁰), the average out-of-pocket direct costs of epilepsy in Bhutan of 91 USD per patient per year was lower. Adjusting for purchasing power parity, these differences become smaller, with an estimated direct cost of 297 international dollars (I$) yearly per patient in Bhutan compared to I$ 371 in India, I$ 801 in China and I$ 321 in the first study in Nigeria. However, out-of-pocket costs for PWE in Bhutan accounted for an average of 3.2% of annual household income; as a comparison, a study in Nigeria, where very few patients had any form of insurance, found that more than half of families spent at least 20% of their household income on epilepsy care yearly.¹⁰ Universal health care in Bhutan may reduce the direct economic burden of epilepsy on families compared to other locations.

However, many participants faced substantial out-of-pocket costs for transportation to and from frequent outpatient clinic visits, which account for a majority of the overall out-of-pocket epilepsy-related expenditures. This result parallels studies in India⁸ and the Netherlands²⁰ that identified transportation as one of the largest contributors to out-of-pocket costs of epilepsy to patients. Frequent clinic visits, whether for medication refills or follow-up visits, can place a significant economic burden on families through the cost of transportation.

With no neurologist in the country, PWE in Bhutan rely on general practitioners, pediatricians, or psychiatrists for medical care for this condition. Generally, participants in this study had poor seizure control, with less than one quarter of adults and just 5% of children in remission from seizures for at least one year, a finding consistent with prior evidence of suboptimal medical management of seizures in Bhutan.²¹ Many individuals with epilepsy were experiencing seizures on a weekly or daily basis, with significant potential to disrupt their daily activities and productivity. In fact, on multivariate linear regression, higher frequency of seizures was a significant predictor of lower levels of school completion.

In this setting, people with epilepsy in Bhutan face substantial indirect economic costs, particularly in lost economic opportunity. Children attending school missed nearly four weeks of school per year on average, while many other children (18%) had dropped out of school entirely because of their epilepsy. This gap in education has the potential to severely impact their future economic capacity. Among adults with epilepsy, 28% were out of work or school, a number that compares poorly to the country’s overall unemployment rate of 3%, or youth unemployment rate of 10%.¹⁵ Nearly one in five adults had stopped working or attending school because of their epilepsy – citing reasons ranging from fear of injury from a seizure in the workplace, to inability to carry out their jobs or schoolwork because of frequent seizures, to feelings of shame or embarrassment. Additionally, several participants reported that they had become monks or nuns because of their epilepsy, suggesting an additional route by which epilepsy may impact economic potential.

Family members of those with epilepsy are also affected, with other adults in the family missing an average of seven days of work each year to provide care if the PWE is an adult, and nearly 17 days if the PWE is a child. Overall, our findings indicate that, even in a setting where direct medical costs are low, indirect costs of epilepsy from lost productivity can place a major economic burden on families, particularly when control of seizures is poor and stigma towards those with epilepsy is high.²²

Finally, we compared the economic status of participants with epilepsy and matched comparisons, and found a significant difference in per-person monthly household income between households with and without an individual with epilepsy. This suggests that the direct and indirect costs of epilepsy may negatively affect a household’s overall economic well-being in Bhutan. However, we did not find any difference in wealth quintile between households with and without epilepsy, indicating that these differences in incomes may not necessarily translate into differences in household assets.

Several limitations of this study must be acknowledged. First, our study relied on participant self-report of direct and indirect costs of epilepsy care, as well as participants’ report of comparison households’ information. Without comprehensive financial records available, this was the most feasible means of obtaining cost information, as is the case in many LLMICs. We mitigated this limitation by having participants provide information about costs they were likely familiar with, such as transportation from home to a health center, that occurred within the prior year only, as well as comparison household information about people they knew well (siblings and friends).

Our study was limited by the lack of detailed medical records for participants. We therefore elicited full descriptions of events, symptoms, and clinical and medical histories, in order to provide the most accurate assessment of disease severity, which was reviewed by medically-trained personnel. All PWE also received diagnostic confirmation by a psychiatrist in Bhutan as well as a US-based neurologist.

Finally, our referral-based cohort limits our ability to generalize our findings to the general population of individuals with epilepsy in Bhutan. Referrals to the epilepsy clinic may have been biased towards individuals with epilepsy that was more difficult to control. Individuals living in Thimphu were also likely overrepresented in our sample; more than one-third of our participants yielded from Thimphu, while the population of Thimphu represents just 16% of the population of Bhutan as a whole.²³ Finally, we were unable to assess the population of PWE who have not received care at the main hospital; these individuals may have greater difficulty accessing medical care for epilepsy.

Epilepsy places a large burden on populations in developing regions of the world. Universal health care may protect families in Bhutan from some of the direct cost burden of caring for a person with epilepsy. However, with low availability of neurological care, and with many individuals with epilepsy continuing to suffer from frequent seizures and stigma, the economic prospects of individuals with epilepsy and their families can be heavily impacted. As transportation constituted the greatest component of out-of-pocket costs for payments, reducing the frequency of in-person visits for medication refills, or providing travel reimbursement, could reduce the cost of epilepsy to families. At a societal level, partnering with school teachers and employers to promote safe and welcoming school and work environments may support the progress of individuals with epilepsy. This study also emphasizes the urgent importance of ensuring that individuals with epilepsy in LLMICs have access to high-quality care. Promoting the capacity of health providers to care for patients with epilepsy, both by providing specialized neurological care as well as by training local health providers in epilepsy diagnosis and treatment, could improve seizure management and reduce the economic burden of this condition.

Key Points.

• In Bhutan, universal health care may reduce direct out-of-pocket costs of epilepsy, which average 3.2% of household income

• Transportation to clinic visits accounts for more than half of out-of-pocket costs of epilepsy

• Epilepsy has negative effects on school attendance and employment, with one in five participants abandoning school or work due to epilepsy

• Epilepsy may negatively impact economic well-being; households with epilepsy had lower monthly income per-person (97 vs. 134 USD; p=0.027)