The importance of people compliance (social desirability bias) in the assessment of epilepsy prevalence in rural areas of developing countries. Results of the Atahualpa Project

SummaryEpilepsy is a major health issue in rural areas of developing countries. However, heterogeneity of epilepsy prevalence in different studies precludes assessment of the magnitude of the problem. Using similar protocols, two population‐based surveys were conducted 12 years apart (2003 and 2015) in a rural Ecuadorian village (Atahualpa). The only difference was a higher people compliance with interviewers during the second survey. Epilepsy prevalence in the 2003 survey was 13.5 per 1,000 (18/1,332) in villagers aged ≥20 years. This rate increased to 26.8 per 1,000 (41/1,530) in the 2015 survey. Thirty‐three persons with epilepsy detected during the second survey lived in the village in 2003; six of them had seizures starting after 2003. Of the remaining 27 cases, 13 (48%) denied their problem during the first survey. Further interview revealed that denial was related to lack of confidence with unacquainted field personnel. Social Desirability Scale‐17 scores were lower in those who admitted having epilepsy than in those who denied their condition (p = 0.048). Lack of confidence with interviewers and a social desirability bias account for a sizable proportion of epilepsy denial in the study population, and may explain heterogeneity of epilepsy prevalence reported in studies conducted in poor rural settings.