Evaluation of Fear in Idiopathic Epilepsy Using Population-Based Survey and Bhalla-Gharagozli Fear in Epilepsy Questionnaire (BG-FEQ)

Kurosh Gharagozli,1– 3 Elham Lotfalinezhad,4,5 Fatemeh Amini,5 Vida Saii,1 Devender Bhalla6– 8 1Iran Epilepsy Association, Tehran, Iran; 2Department of Neurology, Shahid Beheshti University of Medical Sciences, Tehran, Iran; 3Brain Mapping Research Centre, Shahid Beheshti University of Medical Sciences, Tehran, Iran; 4Department of Health Education and Promotion, Tabriz University of Medical Sciences, Tabriz, Iran; 5Iranian Research Centre on Aging, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran; 6Nepal Interest Group of Epilepsy and Neurology (NiGEN), Kathmandu, Nepal; 7Sudan League of Epilepsy and Neurology (SLeN), Khartoum, Sudan; 8Pôle Universitaire Euclide Intergovernmental UN Treaty 49006/49007, Bangui, Central African RepublicCorrespondence: Devender Bhalla Email bhalla@mail.euclid.intIntroduction: The primary objective of this study was to evaluate fear related to epilepsy and its treatment among those with idiopathic epilepsy. Our secondary objective was to estimate the psychometric properties of a brief Bhalla-Gharagozli Fear in epilepsy Questionnaire (BG-FEQ).Methods: We conducted patient-finding exercise in our study areas through various means to obtain subjects with idiopathic epilepsy. We carefully examined each patient through a detailed case-history examination. Following that, we evaluated fear related to epilepsy by using Bhalla-Gharagozli Fear in Epilepsy Questionnaire (BG-FEQ) across two broad domains: epilepsy and pharmacotherapy.Results: The study obtained 52 subjects (39.0 years; 45.0% males, 70.0% married, 35.0% unqualified, 85.0% active epilepsy, 80.0% generalized seizures) with idiopathic epilepsy. The alpha coefficient was 92.8, with no item-specific coefficient of ≤ 0.91. The alpha coefficient was 0.90 and 0.93 for reporting a “yes” and “no” to the items, respectively. We obtained a two-factor structure of BG-FEQ that provided a cumulative variance of 83.6%. The majority (65.0%) reported at least one fear. The per-patient mean number of the fear element was 2.1 (95% CI 1.1– 3.3), which differed significantly for males and females (1.1, 95% CI 0.4– 2.6 and 3.0, 95% CI 1.4– 4.6, respectively, p=0.03). The most frequent fear was that of addiction and the bad effects of anti-seizure medications (both 45.0%). Upon bootstrap regression after constraining gender, the fear elements were associated with illiteracy, difficulty in understanding epilepsy and sleeping in a prone position. The sample power was 99.0%.Conclusion: There was a significant representation of fear among those with idiopathic epilepsy, especially among the females, particularly the fear of brain tumour, premature death and more frequent/severe seizures over time. At least 65.0% of idiopathic subjects are likely to be affected by at least one fear. The essential mitigating approach should be the education of practitioners towards better identification and therapeutic handling of comorbid constructs, and also for the education of patients and their caregivers towards better awareness and prevention. There is also a need for formal Epilepsy Educators towards better awareness, therapeutic support and prevention of epilepsy.Keywords: idiopathic epilepsy, epidemiology, behavioural, fear, mental health