Disability assessment among persons with epilepsy in Mahenge, an onchocerciasis-endemic area in Tanzania: A cross-sectional study

• Published in: Epilepsy & behavior 2023-09, Vol.146, p.109367-109367, Article 109367
• Main Authors: Bhwana, Dan, Siewe Fodjo, Joseph Nelson, Amaral, Luís-Jorge, Vandevenne, Lauren, Francis, Filbert, Challe, Daniel P., Mmbando, Bruno P., Colebunders, Robert
• Format: Article
• Language: English
• Subjects: Anti-seizure medication; Disability; Epilepsy; Nodding syndrome; Onchocerciasis; WHODAS 2.0
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2023.109367

•We investigated epilepsy-related disability in an onchocerciasis focus in Tanzania.•75% of adults and 31% of children with epilepsy had some form of disability.•Disability scores in adults with epilepsy ranged from 0 to 100% using the WHODAS 2.0.•Domains pertaining to community participation were most affected.•Societal rehabilitation of persons with epilepsy can limit the extent of disability. A high prevalence of epilepsy has been observed in the onchocerciasis-endemic focus of Mahenge, Tanzania. This study sought to assess the degree of disability experienced by persons with epilepsy (PWE) in Mahenge and identify associations with sociodemographic and clinical features. This cross-sectional study was conducted in Mahenge, Tanzania, between February and July 2020. PWE were recruited from the Mahenge epilepsy clinic and four neighbouring rural villages (Mdindo, Mzogezi, Mzelezi and Sali). Data were collected using the 36-item version of the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) questionnaire for adults. For children aged 5–17 years, we used the Module on Child Functioning developed by UNICEF and the Washington Group. Questionnaires were administered by trained research assistants. Descriptive statistics were performed, and multivariable analyses (gamma and logistic regressions) were conducted. A total of 321 adults (45.5% males) and 48 children (55.3% males) with epilepsy participated. The overall median WHODAS 2.0 score was 4.8% (IQR: 0.9–18.9). The most affected disability domain was ‘participating in the society’ (median score: 12.5%, IQR: 0–29.2). Fifteen (31.3%) of the children with epilepsy had a disability in at least one domain of the child functioning module, with the ‘accepting change’ domain harbouring the highest proportion of disabled children (12.5%). Higher seizure frequency and longer epilepsy duration were associated with more disability. PWE in Mahenge experience variable degrees of disability. The affected domains indicate the need for societal rehabilitation of PWE in various community and/or social activities. Peer-support groups were instituted at the study sites to address these needs.