Ewan Hunter

Social-cultural aspects of epilepsy in Kilimanjaro Region, Tanzania: Knowledge and experience among patients and carers

OBJECTIVEnUnderstanding the social-cultural aspects of epilepsy in sub-Saharan Africa will help to improve the situation of people with epilepsy (PWE) in this region.nnnMETHODSnThis qualitative study comprised interviews with 41 PWE and their carers. Participants were identified from a large community-based epidemiological study of epilepsy conducted in 2009.nnnRESULTSnEpilepsy was commonly ascribed to witchcraft and curses. Nearly all PWE demonstrated pluralistic care-seeking behavior, including the use of prayers and traditional healers alongside modern care. PWE reported discrimination as a result of their condition. The majority of PWE had suffered burns during seizures.nnnCONCLUSIONSnPoor knowledge and strong cultural and religious beliefs characterize the experience of PWE in this population. Epilepsy-related stigma contributes to overall disease burden, and PWE face exclusion across major life domains. There is a need to educate communities and inculcate perceptions and attitudes that promote early detection of epilepsy and early care-seeking behavior.

Epilepsy in Tanzanian children: Association with perinatal events and other risk factors

Purpose:u2002 To define the prevalence and risk factors for epilepsy in children in a rural district of Tanzania by conducting a community‐based case–control study.

Prevalence of active epilepsy in rural Tanzania: A large community-based survey in an adult population

PURPOSEnTo estimate the prevalence of active epilepsy in adults in an established demographic surveillance site in rural Tanzania. To describe the clinical characteristics of epilepsy and to estimate the treatment gap in this population.nnnMETHODSnA pilot study established that a previously validated screening questionnaire was sensitive for detecting cases of epilepsy in a Kiswahili-speaking Tanzanian population. A door-to-door census of the adult population (total 103,026) used the screening questionnaire to identify possible cases of epilepsy, who were then assessed by a research doctor to establish a diagnosis of epilepsy or otherwise. The prevalence of active epilepsy in this population was estimated with age-standardisation to the WHO standard population. Seizure types and epilepsies were classified according to current recommendations of the International League Against Epilepsy. The treatment gap for epilepsy was estimated based on antiepileptic drug use as reported by cases.nnnRESULTSnTwo hundred and ninety-one cases of active epilepsy, all with convulsive seizures, were identified. The age-standardised prevalence was 2.91/1000 adults (95% CI 2.58-3.24); the crude prevalence adjusted for non-response was 3.84/1000 adults (95% CI 3.45-4.20). Focal-onset seizures accounted for 71.5% of all cases identified. The treatment gap was 68.4% (95% CI 63.0-73.7).nnnCONCLUSIONSnThis is one of the largest community-based studies of the prevalence of epilepsy in adults conducted in sub-Saharan Africa to date. We identified a lower prevalence than has previously been described in this region. The high proportion of focal onset seizures points to a large burden of acquired, and possibly preventable, epilepsy in this population. A treatment gap of 68.4% confirms that interventions to raise awareness of the treatable nature of epilepsy are warranted in this and similar populations.

Co-morbidity of epilepsy in Tanzanian children: A community-based case–control study

Purpose To define the prevalence and associations of co-morbidity and school attendance in older children with epilepsy (CWE) from a rural district of Tanzania by conducting a community-based case–control study. Methods Children aged 6–14 years old with active epilepsy (at least two unprovoked seizures in the last five years) were identified in a cross-sectional survey in Tanzania. Co-morbidities were assessed and cases were compared with age-matched controls. Results Co-morbidity was very common amongst cases (95/112, 85%), with 62/112 (55%) having multiple co-morbidities. Co-morbidities consisted of cognitive impairment (72/112, 64%), behaviour disorder 68/112 (61%), motor difficulties 29/112 (26%), burns and other previous injuries (29/112, 26%). These complications were significantly more common in cases than in controls (odds ratio 14.8, 95%CI 7.6–28.6, p < 0.001). Co-morbidity in CWE was associated with structural cause, abnormal electroencephalogram and early onset seizures. Cognitive impairment was very common in CWE (64%) and was not associated with Phenobarbital use but was associated with motor difficulties, early onset and recurrent seizures. Poor school attendance was found in 56/112 (50%) of CWE, but not in the controls: it was associated with the presence of multiple co-morbidities, especially with motor difficulties in CWE. Conclusion Children with epilepsy in a rural area of sub-Saharan Africa had a high level of co-morbidity. Cognitive impairment and poor school attendance were very common. These associated difficulties in CWE in the region need to be addressed to reduce the negative impact of epilepsy on these children.

Cognition and behavior in a prevalent cohort of children with epilepsy in rural northern Tanzania: A three-year follow-up study.

OBJECTIVESnEighty-five percent of the 33 million children with epilepsy (CWE) worldwide live in low- and middle-income countries (LMICs). There is limited research into epilepsy-related comorbidities in LMICs, and there are no studies of the long-term progression of behavioral and intellectual difficulties in childhood epilepsy in sub-Saharan Africa. We aimed to assess behavior and cognition at three-year follow-up in CWE in rural Tanzania.nnnMETHODSnIn 2010, a cross-sectional study identified 112 CWE 6 to 14years of age and 113 age- and sex-matched controls in the Hai district of northern Tanzania. From March to June 2013, cases and controls (now 10 to 18years of age) were followed up. At baseline, behavior was assessed using the Rutter A Questionnaire and cognition using the Goodenough-Harris Drawing Test. Details of current seizure frequency and antiepileptic drug (AED) use among CWE were collected.nnnRESULTSnAt follow-up, cases had significantly more behavioral difficulties compared with controls (48% of 108 cases versus 14% of 103 controls (p<0.001)). Additionally, 69% of the cases and 16% of the controls had cognitive impairment (p<0.001). In CWE with decreased seizure frequency from baseline to follow-up, behavior had improved significantly. At follow-up, there was no significant difference in behavior between CWE with decreased seizure frequency and those with good seizure control throughout.nnnSIGNIFICANCEnBehavioral difficulties and cognitive impairment are common among CWE in this population. Improved access to AED treatment and subsequent improved seizure control may reduce the frequency of behavioral difficulties seen in this population.

Barriers to access to education for young people with epilepsy in Northern Tanzania: A qualitative interview and focus group study involving teachers, parents and young people with epilepsy

OBJECTIVEnEducational outcomes for young people with epilepsy (YPE) in Hai District, Tanzania, are poor, as is commonly observed elsewhere in Sub-Saharan Africa. The reasons for this finding are not well understood, though stigma arising from supernatural concepts of epilepsy is frequently cited as a barrier to YPE accessing education. In this study, we aimed to explore the reasons why many YPE in Tanzania experience poor access to education, and elicit ways in which education could be improved for YPE according to teachers, parents and YPE.nnnMETHODSnTen focus group discussions with teachers were organized in Hai schools between March and May 2016. The themes arising from these discussions were identified, coded, analyzed and tested in semi-structured interviews with 19 YPE and 17 parents identified from a prevalent cohort of YPE identified in 2009.nnnRESULTSnBehavioral problems and learning difficulties were cited as the main barriers to education for YPE. Other barriers included parental stigmatization, teachers inadequate seizure management, and limited access to specialist schools. Teachers perceived that parents and YPE believe in spiritual etiology and traditional management for epilepsy. However, the majority of teachers, parents, and YPE cited biological etiology and management options, although understanding of epilepsy etiology and management could be improved amongst all groups.nnnSIGNIFICANCEnA multidimensional approach is needed to improve educational access, and hence outcomes, for YPE. Widespread community education is needed to improve knowledge of epilepsy etiology and management. Teachers require seizure management training, and parents need help to recognize YPEs right to education. Educational needs assessments would help to identify YPE requiring specialist schooling, and access to this could be improved. These interventions will likely reduce stigma, ensure appropriate academic and pastoral care at school, and thus enable YPE to attend, and succeed, in education.

Cysticercosis and epilepsy in rural Tanzania: a community‐based case–control and imaging study

To assess the contribution of neurocysticercosis (NCC) to the burden of epilepsy in a rural Tanzanian population.

Stigma and functional disability in relation to marriage and employment in young people with epilepsy in rural Tanzania

PURPOSEnTo assess the impact of childhood epilepsy on social transitioning outcomes for young people with epilepsy (YPWE) living in Tanzania, and to explore influences on these outcomes.nnnMETHODSnAt six years from baseline, we followed up 84 YPWE and 79 age- sex- and village- matched controls recruited into a case-control study of childhood epilepsy in rural northern Tanzania. Data were collected from interviews with young people and their carers using a structured questionnaire. Perceived stigma was evaluated using the Kilifi Stigma Score and functional disability using the Barthel Index (BI). The effects of age, gender, functional disability and stigma on selected markers of social transitioning (education, employment and relationships) were estimated using multivariable modelling.nnnRESULTSnFewer YPWE than controls were in an intimate relationship (42.3% vs. 76.9%) or in education or paid employment (33.3% vs. 91.1%) and they reported elevated perceived stigma scores (27.4% vs. 3.8%). Among YPWE, a positive education or employment outcome was predicted by a lower seizure frequency (adjusted OR 3.79) and a higher BI score (adj. OR 12.12); a positive relationship outcome was predicted by a higher BI score (adj. OR 45.86) and being male (adj. OR 8.55).nnnCONCLUSIONnYPWE were more likely to experience adverse employment, educational and relationship outcomes in the transition to adult life than controls, with the greatest disadvantage experienced by females, those with greater functional disability and those with poorer seizure control. Markers of social transitioning should be included in any prospective evaluation of interventions designed to support these groups.

The epilepsy treatment gap in rural Tanzania: A community-based study in adults

PURPOSEnMost people with epilepsy (PWE) in low-income countries are not treated. We identified risk factors for the epilepsy treatment gap in rural Tanzania.nnnMETHODSnWe identified adult PWE in a community-based prevalence study. Factors associated with failure to access or default from medical care were identified using logistic regression modelling.nnnRESULTSnA total of 291 PWE were included, of whom 253 (86.9%) had presented to medical services. Failure to present was positively associated with using alcohol (odds ratio (OR) 4.20; 95% confidence interval (CI) 1.63 to 10.82) or attending traditional healers (OR 2.62; CI 1.00 to 6.83) and inversely associated with having completed primary education (OR 0.33; CI 0.11 to 0.96). Default from treatment was associated with being male (OR 3.35; CI 1.39 to 8.09), having a seizure-related injury (OR 2.64; CI 1.12 to 6.19), believing in a supernatural cause for epilepsy (OR 5.44; CI 1.48 to 19.94) or having no expressed knowledge of cause (OR 5.29; CI 1.60 to 17.52). Cases less likely to default had a duration of epilepsy greater than 10 years (OR 0.28; CI 0.09 to 0.90) or had previously received a seizure-related diagnosis (OR 0.25; CI 0.09 to 0.65). Of all 291 PWE included, 118 denied taking AEDs; the epilepsy treatment gap in this population was therefore 40.5% (95% CI 34.9 to 46.2).nnnCONCLUSIONnInterventions to improve access to education and to support formal diagnoses may promote access to, and retention under, medical care for PWE in rural Tanzania and in other low-income countries.

Active neurocysticercosis at the Hospital for Tropical Diseases, London: a clinical case series

BackgroundnNeurocysticercosis is the commonest infectious cause of epilepsy in endemic countries, and accounts for a greater number of cases worldwide than any other single pathology. Infection is associated with long-term exposure in low-income countries, although acquisition after travel has been recognized. The standard of care in the UK is inpatient treatment with anti-helminthic drugs and steroids.nnnMethodsnThe authors reviewed all cases of neurocysticercosis managed at the Hospital for Tropical Diseases in London, England, between 2001 and 2015. Active disease was defined as evidence of either viable cysts or involuting cysts with associated parenchymal inflammation.nnnResultsnOf 26 active cases, 65.4% were migrants from nine different countries; 34.6% were UK-born travellers who had visited 19 countries across South and Central America, sub-Saharan Africa, South and South-east Asia; India was the commonest country of exposure in both groups. Only 73.1% presented with seizures; two diagnoses were made through brain imaging of patients with peripheral cysticerci; 53.8% had a single cyst. Migrants were more likely to be seropositive than travellers (p=0.033). Only two patients had seizures during admission, one of whom had multiple seizures prior to diagnosis.nnnConclusionsnNeurocysticercosis presents in a non-endemic setting in both migrants and travellers. Travellers are less likely to be sero-positive. Not all cases of neurocysticercosis present with seizures. Outpatient management could be considered for selected patients.