Masharip Atadzhanov

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.

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 Zambias 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.

Knowledge, attitudes, behaviors, and practices regarding epilepsy among Zambian clerics.

BACKGROUND Epilepsy carries a high burden of social morbidity. An understanding of who propagates stigma and the determinants of stigmatizing attitudes is needed to develop effective interventions. Clerics represent an especially influential social group in Africa. Therefore, we conducted a survey of the knowledge, attitudes, behavior, and practices of Zambian clerics with respect to epilepsy. METHODS We studied clerics in one large rural region as well as in the capital city. The rural survey was conducted door-to-door. In the urban areas, central administration for multiple denominations assisted in survey delivery. The survey, adapted from previously published instruments, included cleric-specific questions and demographic data. Composite scores for knowledge and tolerance were developed. Determinants of higher knowledge and tolerance were assessed. RESULTS Almost all Zambian clerics know someone with epilepsy and have witnessed a seizure. More than 40% report having a family member with epilepsy. Unfortunately, this familiarity is not associated with more knowledge or tolerance for the condition. Younger clerics, urban dwellers, those with fewer children, and those with more years of formal education were significantly more tolerant. More knowledgeable clerics are more likely to recommend that a person with epilepsy seek care from a physician rather than a traditional healer. Formal education was the most important factor in determining tolerance toward epilepsy. CONCLUSIONS Zambian clerics are very familiar with epilepsy, yet have relatively little knowledge of the etiology. Many view traditional healers as the appropriate care provider for epilepsy. To decrease stigma and improve the quality of advice offered by clerics to their congregations, educational programs focusing on the biomedical nature of the disorder are needed, particularly in rural regions.

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.

The spectrum of neurological disorders in a Zambian tertiary care hospital

OBJECTIVES To define the spectrum of inpatient and outpatient neurological illness in a Zambian tertiary care facility where HIV is endemic. METHODS A retrospective period prevalence study of patients seen by the consulting neurologist between 1/2/06-12/20/06 at the University of Zambias University Teaching Hospital (UTH). RESULTS 443 inpatients and 368 outpatients were seen during this period. Overall, 160 (19.7%) patients underwent HIV testing: 125 (15.4%) HIV(+) and 35 (4.3%) HIV(-). The other 651 (80.3%) patients were untested. The most common inpatient neurological diseases among HIV(+) patients were infectious diseases 26 (38.8%), neuropathy/radiculopathy 10 (10.4%), cerebrovascular disease 6 (9.0%), and myelopathy 5 (7.5%). The most common inpatient neurological diseases in the general population were cerebrovascular disease 62 (16.5%), infectious diseases 47 (12.5%), neuropathy/radiculopathy 37 (9.8%), and seizures/epilepsy 27 (7.2%). In the outpatient population, the most common neurological illnesses in HIV(+) patients were neuropathy/radiculopathy 18 (31.0%), cerebrovascular disease 8 (13.8%), dementia/neurodegenerative 8 (13.8%), and encephalopathy 7 (12.1%). Outpatients in the general population most commonly had headaches/cephalgias 60 (19.4%), movement disorders 47 (15.2%), neuropathy/radiculopathy 43 (13.8%), and seizures/epilepsy 39 (12.6%). CONCLUSIONS HIV-infected individuals are a sizeable group among neurology patients in Zambia, and they are affected by a different disease spectrum than the general population. Infectious diseases make up the largest percentage of inpatient neurological illness. Non-infectious causes are responsible for the majority of outpatient neurological cases. Emphasis should be placed on treatment of both infectious and non-infectious neurological illnesses. The most common outpatient neurological conditions are symptomatically treatable with routinely available medications.

Lumbar puncture refusal in sub-Saharan Africa: A call for further understanding and intervention

In 1891, Winter1 described the first 4 cases of tuberculous meningitis (TBM), in which “paracenteses of the theca vertebralis was performed to relieve cerebrospinal fluid (CSF) fluid pressure.” Since this original description of the lumbar puncture (LP) procedure, neurologists worldwide have relied on LPs for both diagnostic and therapeutic purposes. In resource-limited settings, LPs are often the only neurologic test available to aid the clinician in neurologic diagnosis. In sub-Saharan Africa, a large number of patients present to hospitals with acute neurologic symptoms, including those who are HIV-infected and have opportunistic infections such as cryptococcal meningitis and TBM. In these clinical scenarios, LPs are an essential point-of-care diagnostic and therapeutic procedure.2 The benefits of the LP as a diagnostic tool are well-known, but it is important to emphasize that therapeutic LPs are a low-cost measure to monitor and treat intracranial pressure (ICP) due to nonobstructive hydrocephalus in regions of the world where more sophisticated testing and treatment are unavailable due to limitations of medical equipment, medication supplies, and clinical personnel, including specialized neurologists and neurosurgeons.

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.

Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia

BACKGROUND Epilepsy-associated stigma contributes substantially to the social, medical, and economic burden of disease for people with epilepsy (PWE), but little is known about its impact on caregivers of PWE. METHODS To better understand stigma experienced by caregivers of PWE, factors that influence caregiver stigma, and the effect of stigma on a caregivers psychologic well being, we interviewed 100 caregivers of children with epilepsy in Zambia. Questions assessed maternal knowledge, attitudes, and practices related to epilepsy, maternal stigma, mothers proxy report of child stigma, and maternal psychiatric morbidity. RESULTS Of 100 mothers, 39 (39%) indicated that their child was stigmatized because of his or her epilepsy. Maternal proxy report of child stigma was highly correlated with maternal stigma (OR: 5.4, p=0.04), seizure frequency (p=0.03) and seizure severity (p=0.01). One in five of 100 mothers (20%) reported feeling stigmatized because of their childs epilepsy. Higher maternal stigma was associated with lower familial and community support (ORs: 65.2 and 34.7, respectively; both p<0.0001) as well as higher psychiatric morbidity (OR: 1.2; p=0.002). Formal education and epilepsy knowledge were associated with decreased maternal stigma (ORs: 0.8 and 0.7, respectively; both p<0.001). CONCLUSIONS One in five mothers of PWE feel stigmatized because of their childs epilepsy. As maternal stigma is associated with psychiatric morbidity, educating caregivers about epilepsy and screening for anxiety and depression are warranted.

Evaluating the diagnostic capacity of a single-question neuropathy screen (SQNS) in HIV positive Zambian adults.

A single-question neuropathy screen (SQNS) is routinely included in the enrolment data for people commencing antiretroviral therapy in publically funded clinics in Zambia. The authors assessed the sensitivity, specificity, positive and negative predictive value of this SQNS against the Brief Peripheral Neuropathy Screen (BPSN) in detecting HIV-associated sensory neuropathy in patients recruited from a rural and an urban hospital in Zambia. The SQNS was asked followed by conduct of the BPNS by the neurology resident assisted by a Zambian healthcare worker/translator. 77 patients (48 (62.3%) urban and 29 (37.7%) rural) were enrolled. 13 subjects were excluded due to altered mental status. The mean age was 33.7 years (range 15–53 years; SD±7.81). The SQNS was 95.7% sensitive and 80.0% specific, with 88.2% positive predictive value and 92.3% negative predictive value. Age, geographical location, gender and WHO stage were all unrelated to the performance of the SQNS (p>0.05). Despite its reliance on symptoms alone, this study suggests that the SQNS may be a valid research tool for identifying HIV-associated neuropathy among advanced stage HIV patients in Zambia.

Analysis of LRRK2, SNCA, Parkin, PINK1, and DJ-1 in Zambian patients with Parkinson's disease

Recent studies delineate substantial genetic components in Parkinsons disease (PD). However, very few studies were performed in Sub-Saharan African populations. Here, we explore the contribution of known PD-causing genes in patients of indigenous Zambian ancestry. We studied thirty-nine Zambian patients, thirty-eight with PD and one with parkinsonian-pyramidal syndrome (18% familial; average onset age 54.9 ± 12.2 years). In the whole group, all SNCA exons and LRRK2 exons 29 to 48 (encoding for important functional domains) were sequenced. In the familial patients and those with onset <55 years (n = 22) the whole LRRK2 coding region was sequenced (51 exons). In the patients with onset <50 years (n = 12), all parkin, PINK1, and DJ-1 exons were sequenced, and dosage analysis of parkin, PINK1, DJ-1, LRRK2, and SNCA was performed. Dosage analysis was also performed in the majority of the late-onset patients. The LRRK2 p.Gly2019Ser mutation was not detected. A novel LRRK2 missense variant (p.Ala1464Gly) of possible pathogenic role was found in one case. Two heterozygous, likely disease-causing deletions of parkin (exon 2 and exon 4) were detected in an early-onset case. Pathogenic mutations were not detected in SNCA, PINK1, or DJ-1. We also report variability at several single nucleotide polymorphisms in the above-mentioned genes. This is the first molecular genetic study in Zambian PD patients, and the first comprehensive analysis of the LRRK2 and SNCA genes in a Sub-Saharan population. Common disease-causing mutations were not detected, suggesting that further investigations in PD patients from these populations might unravel the role of additional, still unknown genes.