The burden of primary headache disorders in Zambia: national estimates from a population-based door-to-door survey.

BACKGROUND: Three headache disorders - migraine, tension-type headache (TTH) and medication-overuse headache (MOH) - are major contributors to population ill-health. Policy-makers need local knowledge of these to guide priority-setting. Earlier we reported the prevalence of these disorders in Zambia; here we describe the burdens attributable to them. METHODS: This was a cross-sectional population-based survey of adults aged 18-65 years, selected by cluster-randomized sampling in the mostly urban Lusaka Province and mostly rural Southern Province. Interviewers visiting households used a structured questionnaire. Diagnoses made algorithmically applied ICHD-II criteria. Burden enquiry focused on the previous 3 months and the day before interview. Disability was estimated by applying disability weights (DWs) from the Global Burden of Disease Survey 2010. RESULTS: From 1,134 households, 1,085 unrelated adults (450 male, 635 female) were interviewed (refusal rate 4.3%). The gender- and habitation-adjusted 1-year prevalence of migraine was 22.9%, of TTH 22.8%, of headache on ≥15 days/month 11.5%, of probable MOH (pMOH) 7.1%. Reported mean intensity of migraine attacks was 2.7, representing severe pain. People with migraine spent 10.0% of their time in the ictal state (DW: 0.433); they were therefore 4.3% disabled overall. Disability from TTH was much lower. People with pMOH (time with headache: 37.5%; DW: 0.220) were 8.3% disabled overall. Average lost productive time in the preceding 3 months for migraine was 4.1 days from work (6.3% loss) and 4.2 days (4.7% loss) from household work. Losses for pMOH were 4.8 days (7.4% loss) from work and 4.5 days (5.0% loss) from household work. In the population aged 18-65 years (effectively the working population), estimated disability from migraine was 0.98%, with 1.4% of workdays lost, and from pMOH was 0.59%, with 0.53% of workdays lost. Headache yesterday was reported by 28.3% of participants, whose average productivity yesterday was 55.9% of expectation. CONCLUSIONS: Zambia loses 1.93% of GDP to headache, and action is required to mitigate this loss and the associated suffering. Structured headache services with their basis in primary care are the most efficient, effective, affordable and equitable solution. They could be implemented within the existing health-care infrastructure of Zambia. These matters require urgent political attention.

The epidemiology of primary headache disorders in Zambia: a population-based door-to-door survey.

BACKGROUND: Little is known of the epidemiology of primary headache disorders in sub-Saharan Africa. We performed a population-based survey in Zambia using methods previously tested in multiple other countries. METHODS: This cross-sectional survey was conducted by visiting households unannounced, using cluster-randomized sampling, in the mostly urban Lusaka Province and mostly rural Southern Province. Within clusters, households were selected randomly, as was one adult member (18-65 years old) of each selected household. A structured questionnaire, translated into the local languages, was administered face-to-face by trained interviewers. Demographic enquiry was followed by diagnostic questions based on ICHD-II criteria. A random sub-sample of participants were invited for subsequent physician-interview to validate the diagnostic part of the questionnaire. RESULTS: Of 1,134 eligible household members contacted, 1,085 (450 male, 887 urban) consented to interview (refusal rate 4.3%). Others who had been selected but remained unavailable on three visits were not counted as refusals since their reasons were unknown, but gave rise to gender biases, being mostly male in urban areas and mostly female in rural areas. Statistical correction was applied. Adjusted for gender and habitation (urban/rural), the 1-year prevalence of any headache was 61.6%, of migraine 22.9%, of tension-type headache (TTH) 22.8%, of headache on ≥15 days/month 11.5% and of probable medication-overuse headache (pMOH) 7.1%. The adjusted point-prevalence of any headache (headache yesterday) was 19.1%. There was a small proportion (5.3%) of unclassified headache, some of which may have been secondary. The overwhelmingly strong association was between urban dwelling and pMOH (OR: 8.6; P=0.0001), with an urban prevalence of 14.5% (gender-adjusted). Validation of the questionnaire was limited by participants' reluctance to present for physician review, substantial delays in doing so and major self-selection bias among those who did. These were unavoidable problems in resource-limited Zambia. CONCLUSIONS: Primary headache disorders, common in high-income countries, are at least as prevalent in Zambia, a sub-Saharan African country. The selectively urban problem of pMOH seems likely to reflect ready availability of non-prescription analgesics, without easy access to professional health care for headache or any focused public-health education regarding correct usage of analgesics or the dangers of their overuse.

Reexamining epilepsy-associated stigma: validation of the Stigma Scale of Epilepsy in Zambia.

PURPOSE: Epilepsy-associated stigma is an important patient-centered outcome, yet quantification remains challenging. Jacoby's 3-item Stigma Scale is commonly used to assess felt stigma among people with epilepsy (PWE) yet has ceiling effects. The Stigma Scale of Epilepsy (SSE) is a 24-item instrument that measures felt stigma among PWE and stigmatizing attitudes among others. If cross-culturally valid, the SSE may elucidate stigma determinants and provide an outcome measure for interventions. METHODS: We assessed the properties of the SSE in 102 Zambian PWE using exploratory and confirmatory item response theories and compared the latent traits assessed by the SSE to those assessed by Jacoby's Stigma Scale. Differential item functioning based on forced disclosure of epilepsy was examined. RESULTS: The SSE yielded two latent traits--the first reflected difficulties faced by PWE; the second reflected emotions associated with epilepsy. Jacoby's Stigma Scale was associated only with the first latent trait. Forced disclosure was associated with "worry" and "pity" that were associated with the second latent trait. CONCLUSIONS: In Zambian PWE, the SSE captured two latent traits. One trait represents feelings associated with epilepsy, which is theorized as a substantial yet unmeasured part of stigma. The SSE performs well across cultures and may more comprehensively assess felt stigma than other instruments. Further validation is required to determine whether the SSE adequately assesses stigmatizing attitudes among people without epilepsy.

The impact of a short depression and anxiety screening tool in epilepsy care in primary health care settings in Zambia.

Up to 60% of the 50 million persons with epilepsy (PWE) worldwide have depression and anxiety and 80% of PWE live in low-income regions. Common psychiatric comorbidities are often unrecognized and undertreated. We developed and validated a 10-item screening tool for the detection of depression and anxiety at primary healthcare clinics in Zambia in which the baseline detection rate among PWE was 1%. We trained primary care clinic workers in selected clinics to use this screening tool. A retrospective chart review was conducted for 120 consecutive PWE who received care one month after training. Detection improved from 1% to 49%, and treatment was frequently initiated. Of the 120 screened, 59 (49.2%) scored above cutoff point of 18. Of these persons, 43 (73.0%) were positive for depression, 16 (23.0%) were positive for anxiety, 38 (64.4%) received counseling, 18 (30.5%) received antidepressants, and 3 (5.1%) were referred to a psychiatrist. Use of this screening tool resulted in improved mental health care for PWE.

Peer support groups as an intervention to decrease epilepsy-associated stigma.

Eighty percent of people with epilepsy (PWE) reside in low-income countries where stigma contributes substantially to social and medical morbidity. Peer support groups (PSGs) are thought to be beneficial for people with stigmatized conditions, but little data exist regarding PSG effectiveness. We facilitated monthly PSG meetings for men, women, and youth from three Zambian clinics for one year. Pre- and post-intervention assessments measured internalized stigma, psychiatric morbidity, medication adherence, socioeconomic status, and community disclosure. Of 103 participants (39 men, 30 women, and 34 youth), 80 PWE (78%) attended ≥ 6 meetings. There were no significant demographic differences between PWE who attended ≥ 6 meetings and those who attended <6 meetings. Among youth attending ≥ 6 meetings, internalized stigma decreased (p<0.02). Among adults, there was a non-significant stigma decrease. No differences were detected in medication use, medication adherence, or psychiatric morbidity. Peer support groups effectively reduce stigma for youth and may offer a low-cost approach to addressing epilepsy-associated stigma in resource-poor settings.

Detection and management of depression and/or anxiety for people with epilepsy in primary health care settings in Zambia.

PURPOSE: Among the 50 million people with epilepsy (PWE) worldwide ∼15 to 60% likely also suffer from depression and/or anxiety and 80% reside in low-income regions where human and technological resources for care are extremely limited. METHODS: In Zambia, we carried out a retrospective chart review of 200 randomly selected files of PWE using a structured abstraction form to systematically collect socio-demographic data and clinical details on the detection and treatment of depression and/or anxiety. RESULTS: Only 2 PWE (1%) had depression diagnosed and none were given a diagnosis of an anxiety disorder. Complaints suggestive of underlying depressive and/or anxiety disorders were documented in 120 (60%), but no diagnoses were made and no referrals, investigations or treatment were offered. CONCLUSIONS: Further research is required to establish the prevalence of depression and anxiety among PWE in sub-Saharan Africa and efforts are needed to improve screening and treatment for common, treatable psychiatric comorbidities in PWE in resource limited settings.

A primary healthcare screening tool to identify depression and anxiety disorders among people with epilepsy in Zambia.

Among the 50 million people with epilepsy (PWE) worldwide, ~15 to 60% also likely suffer from depression and/or anxiety disorders, and 80% reside in low-income regions where these comorbidities are often underrecognized and undertreated. We developed a 10-item screening tool for the detection of depression and anxiety disorders for use in Zambian primary care clinics where the baseline detection rate of depression and/or anxiety disorders among PWE is ~1%. Consenting adults (n=595) completed the screening tool, and 53.7% screened positive. The screen was validated by a psychiatric clinical officer using DMS-IV criteria. Cronbach's alpha was 0.77 overall and 0.67 and 0.57 for the depression and anxiety components, respectively. Other test characteristics included sensitivity 56.6%, specificity 68.1%, positive predictive value 67.3%, and negative predictive value 57.5%. Interrater reliability (kappa) was 0.85. The psychometric qualities of the tool are inadequate. Development of further, better quality instruments is needed though this will likely require a longer tool which the healthcare workers delivering epilepsy care services have previously deemed nonfeasible for routine use. As we work toward development and acceptability of a more optimal instrument, use of this initial screening tool which healthcare workers are willing to use may increase the identification of comorbid depression and anxiety in the low resource setting described in the study.

The cost of implementing a nationwide program to decrease the epilepsy treatment gap in a high gap country.

Healthcare systems in many low income countries have evolved to provide services for acute, infections and are poorly structured for the provision of chronic, non-communicable diseases which are increasingly common. Epilepsy is a common chronic neurologic condition and antiepileptic drugs are affordable, but the epilepsy treatment gap remains >90% in most African countries. The World Health Organization has recently released evidence-based guidelines for epilepsy care provision at the primary care level. Based upon these guidelines, we estimated all direct costs associated with epilepsy care provision as well as the cost of healthcare worker training and social marketing. We developed a model for epilepsy care delivery primarily by primary healthcare workers. We then used a variety of sources to develop cost estimates for the actual implementation and maintenance of this program being as comprehensive as possible to include all costs incurred within the health sector. Key sensitivity analyses were completed to better understand how changes in costs for individual aspects of care impact the overall cost of care delivery. Even after including the costs of healthcare worker retraining, social marketing and capital expenditures, epilepsy care can be provided at less than $25.00 per person with epilepsy per year. This is substantially less than for drugs alone for other common chronic conditions. Implementation of epilepsy care guidelines for patients receiving care at the primary care level is a cost effective approach to decreasing the epilepsy treatment gap in high gap, low income countries.

The current availability of antiepileptic drugs in Zambia: implications for the ILAE/WHO "out of the shadows" campaign.

Recent concerns regarding antiepileptic drug (AED) availability in Zambia led us to conduct a study in the Lusaka and Southern Provinces to quantify the availability and cost of AEDs and assess determinants. Among 111 pharmacies, almost one-half did not carry AEDs (N = 54; 49.1%). Available AEDs were phenobarbitone (21; 18.9%), carbamazepine (27; 24.3%), valproic acid (4; 3.6%), and phenytoin (3; 2.7%). Adult out-of-pocket monthly costs ranged from US $7 to $30. Pediatric syrups were universally unavailable. Interviews revealed several barriers to AED provision, including that handling phenobarbitone (historically the most affordable AED) has become increasingly difficult because of newly enforced regulatory requirements. Personal communications with epilepsy-care providers in other low income countries suggest that this problem may be widespread. Improved enforcement of existing drug regulations may be contributing to the AED shortage. Social programs aimed at encouraging people with epilepsy to come "out of the shadows" must be preceded by improved AED access.

Epilepsy-associated stigma in Zambia: what factors predict greater felt stigma in a highly stigmatized population?

Epilepsy-associated stigma in Africa has been described largely in terms of enacted stigma or discrimination. We conducted a study of 169 adults with epilepsy attending epilepsy clinics in Zambia's Lusaka or Southern province using a three-item instrument (maximum score = 3). Potential determinants of felt stigma including age, gender, education, wealth, disclosure status (meaning whether or how their community members knew of their condition), seizure type (generalized vs partial), seizure frequency, the presence of visible epilepsy-associated stigmata, personal contagion beliefs, and community contagion beliefs. The median stigma score was 2.5, suggesting some ceiling effect in the instrument. People with epilepsy who believed their condition to be contagious, who thought their community believed epilepsy to be contagious, and whose condition had been revealed to their community against their wishes reported more felt stigma. Community and clinic-based educational campaigns to dispel contagion beliefs are needed.

Women's experiences living with epilepsy in Zambia.

Epilepsy-associated stigma is a well-recognized phenomenon that adversely impacts the lives of people with epilepsy (PWE). The burden of stigma follows power differentials, with socially and economically disenfranchised groups being particularly susceptible. To guide instrument development for quantitative studies, we conducted a series of focus group discussions among PWE and found that women with epilepsy experienced especially adverse social and economic problems because of epilepsy-associated stigma. The social burden of the disease largely outweighed the medical burden. Women revealed seizure worries related to accidental and intentional injury and the risk of breaking taboos as well as limitations in role fulfillment and extremes of social rejection by family and community. Our findings have implications for access to care and care delivery for vulnerable populations with epilepsy.

The socioeconomic status of children with epilepsy in Zambia: implications for long-term health and well-being.

Epilepsy is a highly stigmatized disorder in Zambia. Studies indicate that adults with epilepsy in many regions have significantly lower socioeconomic status (SES) than their peers. We conducted a case-control study of Zambian children with epilepsy (CWE) to assess their SES. Ninety-eight pairs of children were recruited (n=196); their mean age was 10.8 years, and 59.7% were male. The comparison group's medical conditions included asthma (54.0%), rheumatic heart disease (26.6%), type 1 diabetes (14.2%), and hypertension (5.2%). Compared with children with nonstigmatized chronic medical conditions, CWE have fewer educational opportunities, more environmental hazards, and poorer food quality and security (all P's<0.05). This deprivation may be related to lost maternal income for mothers who deferred employment so they could remain at home to care for their children. This early deprivation has long-term implications for health and well-being. Health care workers and child advocates need to be aware of the circumstances facing CWE in this region.

Epilepsy-related knowledge, attitudes, and practices among Zambian police officers.

OBJECTIVE: In Zambia, where emergency medical services are very limited, the police are frequently called to the scene for unaccompanied people experiencing seizures or exhibiting disturbed behaviors during a seizure. Police officers receive no formal medical training to manage such encounters. We developed and administered a police-specific survey to assess knowledge, attitudes, and practices (KAP) regarding epilepsy among police officers in Zambia. METHODS: In 2004, a 28-item KAP questionnaire that included queries specific to police encounters with seizures and epilepsy was developed and delivered to a random sample of 200 police officers stationed in Lusaka. Descriptive data were reviewed and open text questions postcoded and categorized. RESULTS: The response rate was 87.5% (n=175). Police were familiar with epilepsy, with 85% having witnessed a seizure. Although 77.1% recognized epilepsy as a brain disorder, almost 20% blamed spirit possession, 13.9% associated epilepsy with witchcraft, and more than half the respondents believed epilepsy is contagious. When asked how they would treat someone brought in for disturbing the peace during a seizure, most police provided supportive or neutral responses, but 8% reported taking harmful actions (arrest, detain, handcuff, restrain), and 14.3% indicated that people with epilepsy in police custody require quarantine. CONCLUSIONS: A significant number of police officers in Zambia lack critical knowledge regarding epilepsy and self-report detrimental actions toward people with seizures. In regions of the developing world where the police provide emergency medical services, police officers need to be a target for educational and social intervention programs.

Zambian health care workers' knowledge, attitudes, beliefs, and practices regarding epilepsy.

OBJECTIVE: Zambia suffers from a physician shortage, leaving the provision of care for those with epilepsy to nonphysician health care workers who may not be adequately trained for this task. These individuals are also important community opinion leaders. Our goal in this study was to determine the knowledge, attitudes, beliefs, and practices of these health care workers with respect to epilepsy. METHODS: Health care workers in urban and rural districts of Zambia completed a self-administered, 48-item questionnaire containing items addressing demographics, personal experience with epilepsy, social tolerance, willingness to provide care, epilepsy care knowledge, and estimates of others' attitudes. Analyses were conducted to assess characteristics associated with more epilepsy care knowledge and social tolerance. RESULTS: The response rate was 92% (n=276). Those who had received both didactic and bedside training (P=0.02) and more recent graduates (P=0.007) had greater knowledge. Greater knowledge was associated with more social tolerance (P=0.005), but having a family member with epilepsy was not (P=0.61). Health care workers were generally willing to provide care to this patient population, but approximately 25% would not allow their child to marry someone with epilepsy and 20% thought people with epilepsy should not marry or hold employment. Respondents reported that people with epilepsy are feared and/or rejected by both their families (75%) and their community (88.8%). CONCLUSIONS: Knowledge gaps exist particularly in acute management and recognition of partial epilepsy. More recent graduates were more knowledgeable, suggesting that curriculum changes instituted in 2000 may be improving care. Health care workers expressed both personal and professional reservations about people with epilepsy marrying. In addition to improving diagnosis and treatment skills, educational programs must address underlying attitudes that may worsen existing stigmatizing trends.

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

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.

Zambia mental health country profile.

This country profile for Zambia was compiled between 1998 and 2002. The objectives of the exercise were to first of all avail policymakers, other key decision makers and leaders in Zambia, information about mental health in Zambia in order to assist policy and services development. Secondly, to facilitate comparative analyses of mental health services between countries. The work involved formation of a core group of experts who coordinated the collection of information from the various organizations in Zambia. The information was later shared to a broad spectrum of stakeholders for consensus. A series of focus group discussions (FGDs) supplemented the information collected. There are various factors that contribute to mental health in Zambia. It is clear from the Zambian perspective that social, demographic, economic, political, environmental, cultural and religious influences affect the mental health of the people. With a population of 10.3 million and annual growth rate of 2.9%, Zambia is one of the most urbanized countries in sub-Saharan Africa. Poverty levels stood at 72.9% in 1998. In terms of unemployment, the most urbanized provinces, Lusaka (the capital city), and the copper-belt are the most affected. The gross domestic product (GDP) is US$3.09 billion dollars while per capita income is US$300. The total budget allocation for health in the year 2002 was 15% while the proportion of the GDP per capita expenditure for health was 5.6%. The HIV/AIDS prevalence rates stand at 20% among the reproductive age group 15-49 years. Political instability and wars in neighbouring states has resulted in an influx of refugees. Environmental factors affecting the country include natural and man-made disasters such as floods and drought, mine accidents, and deforestation. To a large extent in Zambia, people who are mentally ill are stigmatized, feared, scorned at, humiliated and condemned. However, caring for mental ill health in old age is positively perceived. It is traditionally the duty and responsibility of the extended family to look after the aged. Gender based violence (GBV) is another issue. Women, who are totally dependent on their spouses economically, are forced by circumstances to continue living in abusive relationships to the detriment of their mental well-being. In Zambia, the family is considered sacrosanct and the affairs of the family members, private. It is within this context that GBV is regarded as a family affair and therefore a private affair, yet spouse beating has led to depression and in some cases death. In terms of psychiatric services, there are close to 560 beds for psychiatric patients across the country. Common mental disorders found in Zambia are acute psychotic episodes, schizophrenia, affective disorders, alcohol related problems and organic brain syndromes. About 70-80% of people with mental health problems consult traditional health practitioners before they seek help from conventional health practitioners. Over time the number of frontline mental health workers and professional staff has been declining. This is due to the 'brain drain', retirement, death and low output from training institutions. For practicing psychiatrists, only one is available for the whole country. Other key mental health workers such as psychologists, social workers and occupational therapists are also in short supply. All in all, the mental health services situation in Zambia could be described as critical, requiring urgent attention.