The social and economic impact of epilepsy in Zambia: a cross-sectional study

doi:10.1016/S1474-4422(06)70629-9

The Lancet Neurology

Volume 6, Issue 1, January 2007, Pages 39-44

https://doi.org/10.1016/S1474-4422(06)70629-9 Get rights and content

Summary

Background

Among the 40 million people with epilepsy worldwide, 80% reside in low-income regions where human and technological resources for care are extremely limited. Qualitative and experiential reports indicate that people with epilepsy in Africa are also disadvantaged socially and economically, but few quantitative systematic data are available. We sought to assess the social and economic effect of living with epilepsy in sub-Saharan Africa.

Methods

We did a cross-sectional study of people with epilepsy concurrently matched for age, sex, and site of care to individuals with a non-stigmatised chronic medical condition. Verbally administered questionnaires provided comparison data for demographic characteristics, education, employment status, housing and environment quality, food security, healthcare use, personal safety, and perceived stigma.

Findings

People with epilepsy had higher mean perceived stigma scores (1·8 vs 0·4; p<0·0001), poorer employment status (p=0·0001), and less education (7·1 vs 9·4 years; p<0·0001) than did the comparison group. People with epilepsy also had less education than their nearest-age same sex sibling (7·1 vs 9·1 years; p<0·0001), whereas the comparison group did not (9·4 vs 9·6 years; p=0·42). Housing and environmental quality were poorer for people with epilepsy, who had little access to water, were unlikely to have electricity in their home (19% vs 51%; p<0·0001), and who had greater food insecurity than did the control group. During pregnancy, women with epilepsy were more likely to deliver at home rather than in a hospital or clinic (40% vs 15%; p=0·0007). Personal safety for people with epilepsy was also more problematic; rape rates were 20% among women with epilepsy vs 3% in the control group (p=0·004).

Interpretation

People with epilepsy in Zambia have substantially poorer social and economic status than do their peers with non-stigmatised chronic medical conditions. Suboptimum housing quality differentially exposes these individuals to the risk of burns and drowning during a seizure. Vulnerability to physical violence is extreme, especially for women with epilepsy.

Introduction

Among neuropsychiatric disorders, epilepsy contributes substantially to the global burden of disease.¹ 80% of the 40 million people with epilepsy worldwide reside in low-income regions² where resources for care are extremely limited. In sub-Saharan Africa, although basic diagnostic services, such as neuroimaging and electroencephalography, were available in 70–80% of countries surveyed in 2004,³ such services are located almost exclusively in urban areas, often in association with private hospitals, and are de facto not available to most people with epilepsy.⁴ The treatment gap (proportion of people with active epilepsy who warrant but who are not receiving treatment) among people with epilepsy in sub-Saharan Africa remains at more than 90%,⁵ despite the affordability of phenobarbital (less than US$10 per person per year). For individuals who do not respond to or who cannot tolerate phenobarbital, second-line drugs are often not available. This enormous treatment gap in the face of at least one reasonably priced drug is likely to be associated with a lack of trained healthcare providers and traditional belief systems that direct care-seeking outside of medical facilities.3, 6, 7 Adherence to chronic medication use might also be further limited by the reality that for people with seizure disorders, especially in less developed regions, the condition encompasses far more than a simple medical problem requiring tablets. Traditional medical systems in such regions might be more adept at addressing these larger issues even if their treatments fail to improve seizure control.⁸

Untreated seizures in low-income regions have significant consequences in terms of medical morbidity and mortality. Severe burns, fractures, and other seizure-related traumas occur commonly, especially among individuals with long-standing untreated epilepsy.⁹ In Tanzania, a follow-up study undertaken in the pre-HIV era showed that over a 30 year period 80% of people with epilepsy who had been receiving treatment at an established clinic died, with around 50% of deaths related to status epilepticus, burns, or drowning.¹⁰ The psychosocial and economic consequences of epilepsy in less developed countries are generally acknowledged to contribute substantially to the burden of this highly stigmatised disease.¹¹ People with epilepsy in sub-Saharan Africa may have fewer educational, marital, and employment opportunities.12, 13, 14, 15, 16, 17, 18 Epilepsy-associated stigma and loss of personhood could even exacerbate the effects of regional famine and food insecurity.¹⁹ A cross-cultural review of epilepsy-associated stigma and stigma sequelae lend support to reports of a detrimental effect of epilepsy on health-related quality of life.²⁰

Although qualitative and experiential reports indicate substantial negative social and economic consequences associated with epilepsy in low-income regions,14, 21, 22 little quantitative systematic research has been done. To assess the social and economic effect of living with epilepsy in sub-Saharan Africa, we completed a cross-sectional study of adults with epilepsy in Zambia.

Section snippets

Participating sites

Four outpatient sites providing epilepsy care as part of their primary and multi-specialty healthcare services were included in this study—two urban, one rural, and one mixed site. The urban sites included the outpatient specialty clinics at the University of Zambia's University Teaching Hospital in Lusaka and four small free-standing clinics scattered throughout Lusaka associated with Chainama Hills Hospital. Monze Mission Hospital, located on the main tarmac road between Lusaka and

Results

A total of 338 people (47% men) were enrolled and interviewed during the study period (table 1). Chronic medical problems among controls included asthma (37%), diabetes mellitus (28%), hypertension (24%), and rheumatic heart disease (11%). Just over a third of people with epilepsy had evidence of physical stigmata (usually burn scars) as per the interviewers' assessment (table 2). The mean stigma score for cases was 1·8 versus 0·4 among controls (p<0·0001) and the groups differed significantly

Discussion

The findings of this study lend support to the long-held supposition that people with epilepsy in developing regions carry a heavy burden of stigma with associated poor social and economic status. This cross-sectional study matched individuals by age, sex, and site of care and allowed us to assess the differential burden of epilepsy relative to non-stigmatised, chronic, health conditions. Future work to investigate epilepsy stigma versus other disease stigma is needed.

Since many people with

References (34)

L Eisenberg
Global burden of disease
Lancet
(1997)
GL Birbeck et al.
Neurologic services in Sub-Saharan Africa: a case study among Zambian primary healthcare workers
J Neurol Sci
(2002)
AG Diop et al.
The global campaign against epilepsy in Africa
Acta Trop
(2003)
C Amoroso et al.
Epilepsy and stigma
Lancet
(2006)
G Birbeck et al.
Zambian teachers-What do they know about epilepsy and how can we work with them to decrease stigma?
Epilepsy Behav
(2006)
M Atadzhanov et al.
Knowledge, attitudes, behaviors and practices (KABP) regarding epilepsy among Zambian clerics
Epilepsy Behav
(2006)
R Baskind et al.
Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease
Epilepsy Behav
(2005)
L Jilek-Aall et al.
Psychosocial study of epilepsy in Africa
Soc Sci Med
(1997)
D Ndour et al.
A survey of school teachers' knowledge and behaviour about epilepsy, in a developing country such as Senegal
Rev Neurol (Paris)
(2004)
A Jacoby et al.
Epilepsy and social identity: the stigma of a chronic neurological disorder
Lancet Neurol
(2005)

T Yamano et al.

Measuring the impact of working age adult mortality in Kenya

World Development

(2004)

A Jacoby

Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission

Soc Sci Med

(1994)

M Leonardi et al.

The global burden of epilepsy

Epilepsia

(2002)

Atlas: epilepsy care in the world, 2005

(2005)

A Meyer et al.

Determinants of the epilepsy treatment gap in developing countries

Neurology

(2006)

E Chomba et al.

Zambian healthcare workers' knowledge, attitudes, beliefs and practices regarding epilepsy

Epilepsy Behav

(2006)

R Baskind et al.

Epilepsy care in Zambia: a study of traditional healers

Epilepsia

(2005)

Cited by (126)

Psychometric evaluation of the Serbian version of the Stigma Scale of Epilepsy (SSE)
2023, Epilepsy and Behavior
To evaluate the psychometric properties of the Serbian-language version of the Stigma Scale of Epilepsy (SSE).
The sample consisted of 108 patients with epilepsy (PWE) (60.2 % were female, age range: 19–67 years) and 102 students (86.3 % were female, age range: 18–47 years). The study encompassed two phases: (1) translation of the SSE into Serbian using the back-translation technique, and (2) evaluation of reliability and construct validity of the Serbian-language version of SSE. In addition to the SSE, the PWE filled out a Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), Patient Health Questionnaire-9 (PHQ-9), and Generalized Anxiety Disorder-7 (GAD-7). The socio-demographic and clinical variables were noted for each patient by the semistructured interview. Besides completing the SSE, the students were asked if they knew anyone with epilepsy. The reliability of the questionnaire was tested by assessing the internal consistency of the scale (Cronbach’s α), while construct validity was assessed by factor analysis, method of known-groups validation, and correlation analysis.
SSE demonstrates a satisfactory level of reliability in both samples, with Cronbach's α of 0.86 in the PWE sample and 0.90 in the student sample. Using exploratory factor analysis, four factors were identified in both samples, corresponding relatively well with the scale domains originally produced, with a few exceptions described. Adverse effects (AEs) of antiseizure medications (ASMs) and driving ability significantly influenced SSE scores, but there were no significant effects of other socio-demographic and clinical variables on epilepsy-related stigma in the PWE sample. In addition, depression severity significantly influenced SSE scores (based on NDDI-E cut-off score), with the SSE showing a positive association with PHQ-9 (r = 0.42, p < .001) and GAD-7 (r = 0.35, p < .001) as well. Regarding the student sample, the effects of personal knowledge of someone with epilepsy on SSE scores were found to be significant. Besides, students (M = 46.28, SD = 16.43) reported higher epilepsy-related stigma than patients (M = 40.66, SD = 17.01), t(208) = 2.43, p < .05, d = 0.34.
The Serbian version of the SSE has good psychometric properties and represents a useful tool for assessing epilepsy-related stigma in both patients and the general population.
Epilepsy, sexual function, and mindfulness-based cognitive therapy
2023, Handbook of Cognitive Behavioral Therapy by Disorder: Case Studies and Application for Adults
Epilepsy, like many common medical disorders, can cause sexual dysfunction. However, the prevalence and nature of sexual dysfunction among people with epilepsy, its causes, and optimal management strategies are unclear. Sexual dysfunction in epilepsy is caused by several factors including disease-related factors and drug treatment, psychiatric factors, and social factors. Due to the significant prevalence of sexual dysfunction among patients with epilepsy, the synergistic effect of sexual dysfunction, and mental disorders, design and implementation of psychological interventions including mindfulness-based cognitive therapy (MBCT) for sexual disorders among patients with epilepsy have been proposed. MBCT is an approach to psychotherapy that uses cognitive-behavioral therapy (CBT) techniques alongside mindfulness meditation techniques. MBCT protocol has been adapted to treat female sexual dysfunction of different groups including epilepsy showing promising effects. Consequently, issues concerning sexual activity should be raised by healthcare professionals as a routine part of the management of patients with epilepsy, and MBCT can be considered as a promising effective treatment strategy.
Community knowledge, attitudes, and practices regarding epilepsy in Mahenge, Tanzania: A socio-anthropological study in an onchocerciasis-endemic area with a high prevalence of epilepsy
2022, Epilepsy and Behavior
Throughout Africa, epilepsy is a highly stigmatized condition. It is often considered to be contagious. This study aimed to assess community knowledge, attitude, and practices toward epilepsy in four villages namely Mdindo, Msogezi, Mzelezi, and Sali within Mahenge division, in Morogoro region, Tanzania. These villages are located in an onchocerciasis–endemic area with a high prevalence of epilepsy.
A qualitative cross-sectional study was conducted between June and July 2019 within the framework of a multi-disciplinary research project investigating the association between onchocerciasis and epilepsy. Focus group discussions (FGDs) and in-depth interviews (IDIs) were held with persons with epilepsy (PWE) and their caretakers, community resource persons, and program coordinators of the neglected tropical diseases program.
The main symptoms of epilepsy were well described by all participants in all villages. PWE and caretakers in all villages considered epilepsy to be a major health problem and some participants ranked it second in importance after malaria. The reported perceived causes of epilepsy included febrile seizures during childhood (locally known as degedege), heredity, evil spirits, and inhaling flatus or touching secretions from PWE, especially during seizures. Knowledge about the association between epilepsy and onchocerciasis was low. People with epilepsy are disregarded, stigmatized, and marginalized from various opportunities such as conjugal rights, schooling, leadership roles, and property inheritance. Traditional healers are often the first contact when seeking care after a person develops epilepsy.
Epilepsy is a major health burden and public health concern in the Mahenge area. The negative attitudes toward PWE and misconceptions about the causes of epilepsy contribute to delays in seeking care at health facilities. Findings from this study will be used to optimize the comprehensive community-based epilepsy treatment program that was recently initiated in the area.
Using community health workers as an alternative approach for epidemiological research on epilepsy in six health districts in Mali
2021, Epilepsy and Behavior
In Mali, the burden of epilepsy is underestimated due to socio-cultural barriers that keep most people with epilepsy out of the local health facilities. The objective of this study was to evaluate the performance of trained community health workers (CHWs) in identifying epilepsy cases (active case detection) as compared to the passive cases detection (PCD) during outpatient visits at the community health centers in the health districts (HDs) of Kolokani, Kayes, Kéniéba, Sikasso, Kadiolo, and Tominian.
A two-phase cross-sectional study was conducted from February to December 2019. In phase 1, trained CHWs conducted a census in 1017 villages organized into 174 community health centers which are part of the six study HDs to identify suspected epilepsy cases (SEC). Investigators used a modified epilepsy screening questionnaire from a validated standard questionnaire with the following three (3) questions: (i) Does or did the subject have a loss of consciousness and/or a loss of urine and/or drooling? (ii) Does or did the subject have an uncontrollable shake or abnormal movements of limb(s) (convulsions), with sudden onset and duration of a few minutes? (iii) Has or had the subject ever been told that he or she has epilepsy? During phase 2, neurologists confirmed the supposedly SEC (censed by the CHWs) in the first 30 villages with the highest number of SEC in each HD that were reported during phase 1.
Of a total of 4830 SEC, 422 (10%) were identified by PCD during routine outpatient visits and 4408 (90%) through the active case detection (ACD) using the trained CHWs. The majority of SEC reported by the CHWs (PCD) were confirmed by neurologists, i.e. 82.9% (1645/1985). Phenobarbital was available in only 26 (14.9%) of the 174 surveyed health centers. Confirmed cases of epilepsy were reported in all the 174 health centers with prevalence varying from 91/100,00 to 285/100,000.
Active case detection of epilepsy using trained CHWs is an effective approach for epidemiological studies of epilepsy in the community settings as compared to the passive approach.
Patients' knowledge about epilepsy in a tertiary medical center: A cross-sectional study from Riyadh, Saudi Arabia
2021, Epilepsy and Behavior
Citation Excerpt :
Employment, aside from its economic value, is essential for personal status, self-worth identity, and overall quality of life. Several studies conducted in different regions of the world confirmed that the rates of underemployment, unemployment, or working in lower or unskilled types of jobs are generally higher in PWE than the general population [30,32–37]. Multiple factors have been implicated in reducing the rate of employment among PWE.
Epilepsy is a noncommunicable disease that affects approximately 65 million people worldwide. Its management depends greatly on the self-management capacity of the individual. Patients with epilepsy (PWE) who have a good level of knowledge about their disease tend to have better coping mechanisms, as well as better compliance in taking their antiepileptic drugs (AEDs), which improves overall control of symptoms. This study aimed to evaluate the current patients' knowledge about epilepsy and identify factors associated with knowledge of different aspects of epilepsy and its management in a tertiary medical center in Riyadh, Saudi Arabia.
A cross-sectional study was carried out at a tertiary medical center in Riyadh, Saudi Arabia. Participants were included if they had a documented diagnosis of epilepsy and excluded if they were non-Saudi or had nonepileptic seizures. The Arabic version of the Epilepsy Patient Knowledge Questionnaire (EPKQ) was used to assess patient's knowledge of epilepsy definition and etiology, safety concerns, medication compliance, social activities, and legal issues of employment and driving. Fisher's exact and Chi-Square tests were used to investigate differences in knowledge of epilepsy among different segments of participants. Data management and statistical analyses were carried on using the IBM SPSS Statistics for Windows, version 25.
A total of 126 PWE were enrolled in the study. About two-thirds of them were females, and about 68% of them were at least high-school graduates. About one-half of PWE had good knowledge of their condition (> 75%), and females had better knowledge than males (p = 0.004). The majority (75.4%) of PWE were knowledgeable about the etiology of epilepsy, about 70% knew that putting a foreign object in a seizing patients' mouth was inappropriate, and only 38% of them did not have adequate knowledge of situations that increase the risk of seizure. About 40% of PWE thought pregnant women should discontinue their AEDs, 53.2% of participants knew what to do when they experience side effects from AEDs, but most of them recognized that they should not automatically stop taking their medications when they stop having seizures. Patients older than 50 years or younger than 21 years of age were less likely to recognize that it was safe for PWE to engage in different social activities (p = 0.042). About 30% of respondents believed that PWE cannot engage in most types of jobs, and more than 50% of participants did not know under which situation PWE can drive.
This study revealed that about half of PWE had inadequate knowledge about their disorder. Patients with epilepsy had better knowledge about the causes of their condition compared with safety concerns and the treatment of epilepsy, whereas the majority of participants knew the types of jobs and activities that they could engage in. Hence, educational interventions are needed to promote patients' knowledge, especially in terms of safety and the legalities of employment and driving.
Barriers to biomedical care for people with epilepsy in Uganda: A cross-sectional study
2021, Epilepsy and Behavior
Epilepsy, a neurological disorder with effective biomedical treatment, remains largely untreated in Uganda. Potential reasons for this treatment gap (TG) include limited access to trained providers and clinics, social stigmata of seizures, cultural beliefs, or lack of public understanding of epilepsy as a treatable condition. The current study aimed to formally evaluate barriers faced by people with epilepsy (PWE) in Uganda when seeking biomedical care.
In a cross-sectional study, 435 participants drawn from a community prevalence study were enrolled. We included participants reporting a history of recurrent seizures suggestive of epilepsy, who completed a survey about barriers to obtaining care for their symptoms. Principal axis factor analysis (PFA) using a promax rotation was conducted for data reduction. Frequencies of barrier factors were compared across those who did not seek care for epilepsy (n = 228), those who sought care from biomedical facilities (n = 166), and those who sought care from a traditional or pastoral healer (n = 41).
The PFA yielded a five-factor solution: 1) logistical and actual costs; 2) treatment effectiveness; 3) influence of the opinion of others; 4) doctors' care; and 5) contextual factors impacting decision-making. Variables related to logistical and actual costs were most endorsed. Comparison of groups by care sought did not reveal a difference in endorsement of factors, with the exception that those who sought biomedical care were more likely to endorse factors related to doctors' care compared with those that sought care from traditional or pastoral healers (P = .005).
People with repetitive seizures in Uganda report several barriers to obtaining biomedical care in Uganda, with those related to practical and actual costs endorsed the most. It is imperative that interventions developed to reduce the TG in Uganda consider these practical issues to improve access to effective epilepsy care.
This article is part of the Special Issue “The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda

View all citing articles on Scopus

View full text

Fast track — ArticlesThe social and economic impact of epilepsy in Zambia: a cross-sectional study

Summary

Background

Methods

Findings

Interpretation

Introduction

Section snippets

Participating sites

Results

Discussion

Lancet

J Neurol Sci

Acta Trop

Lancet

Epilepsy Behav

Epilepsy Behav

Epilepsy Behav

Soc Sci Med

Rev Neurol (Paris)

Lancet Neurol

World Development

Soc Sci Med

The global burden of epilepsy

Epilepsia

Atlas: epilepsy care in the world, 2005

Determinants of the epilepsy treatment gap in developing countries

Neurology

Zambian healthcare workers' knowledge, attitudes, beliefs and practices regarding epilepsy

Epilepsy Behav

Epilepsy care in Zambia: a study of traditional healers

Epilepsia

Fast track — Articles
The social and economic impact of epilepsy in Zambia: a cross-sectional study