Mortality implications and factors associated with nonengagement in a public epilepsy care initiative in a transient population

• Published in: Epilepsy & behavior Vol. 112; p. 107438
• Main Authors: Chawla, Archita, Singh, Gagandeep, Sharma, Suman, Bansal, Rajinder, Bansal, Namita, Chowdhury, Anuraag, Paul, Birinder S., Sharma, Sarit, Sander, Josemir W.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.11.2020
• Subjects: Aged; Cross-Sectional Studies; Delivery of Health Care; Epilepsy - epidemiology; Epilepsy - therapy; Humans; Income; Low- and middle-income countries; Mortality, Premature; Premature mortality; Risk factors; Verbal autopsy; Low- and middle-income countries; Premature mortality; Verbal autopsy; Risk factors
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2020.107438

Community-based, public care programs are a requisite to close the epilepsy treatment gap in disadvantaged communities in low- and middle-income countries (LMICs). Potential beneficiaries may, however, choose not to engage in these programs. The aim of the study was to describe factors associated with and mortality consequences of nonacceptance of a public epilepsy care initiative. In this cross-sectional study, we contacted 207 (36%) people out of 575 who screened positive for epilepsy during a population-based survey of 59,509 people. They were invited for neurological evaluation and care provision (including antiseizure medications (ASMs)) but chose not to engage. Structured questionnaires and qualitative interviews were conducted to determine reason for their nonengagement. Factors associated with nonengagement were evaluated by univariate and multivariate analysis. We conducted verbal autopsies for those who had died. Ten (5%) of the 207 individuals died since the initial screening; six with epilepsy-related causes. Of those who could be contacted (n = 48), 40 (19%) were confirmed to have epilepsy. Nonengaging individuals were likely to be older (odds ratio (OR): 1.02; 95% confidence interval (CI), 1.01, 1.11), locals (OR: 4.32; 95% CI, 1.55, 12.03), and earn less than US$ 78/month (OR: 3.6; 95% CI, 1.62, 8.06). Reasons for not engaging included a belief that epilepsy is inconsequential, loss of daily wages owing to healthcare facility visit and physical infirmity. Nonacceptance of a community-based public epilepsy care initiative is associated with high premature mortality, mostly attributed to epilepsy-related causes. Older age, ethnic status, and economic deprivation are factors associated with nonacceptance, though the underlying reasons may be varied. •Nonengagement in epilepsy public programs is common in resource-limited settings.•This might be due to economic reasons or beliefs about epilepsy and its treatment.•People with epilepsy in resource-limited communities are at risk of early death.