Explaining the unknown: causal illness beliefs among people with epilepsy without identified cause.

objectiveWe explored the relations of demographic and clinical characteristics to causal illness beliefs ("attributions") among people with epilepsy without identified non-genetic (acquired) cause.

methodsWe surveyed 644 patients treated at a comprehensive epilepsy center (2019-2022) and abstracted data from their medical records. Participants completed the revised Illness Perception Questionnaire, rating the likelihood of 17 possible causes of their epilepsy, and named what they believed was the most important cause in a free-response item. We collapsed causal attributions into five factors: genetics, psychosocial, non-genetic biological, fate, and chance. We assessed associations of causal attributions with demographic and clinical epilepsy characteristics using multivariate generalized linear and multinomial logistic regression models.

resultsParticipants with a family history of epilepsy were more likely to endorse genetic causes (adjusted mean [aM] = 2.85) than were those without (aM = 2.14), p < 0.001. Those with a high school education or less (aM = 1.78) were more likely to endorse psychosocial causes (e.g., psychological distress) than were college graduates (aM = 1.46), p < 0.001. Participants whose last seizure was < 1 year ago were more likely to attribute their epilepsy to psychosocial causes (aM = 1.55) than were those whose last seizure was ≥ 1 year ago (aM = 1.33), p < 0.001. In the free-response item, the causes considered most important were: non-genetic biological (43.8 %), genetics (26.8 %), psychosocial (20.7 %), fate (6.0 %), and chance (2.7 %). SIGNIFICANCE: Demographic and clinical characteristics are associated with causal attributions of epilepsy. These relationships have implications for epilepsy management and treatment and suggest a need for improved patient-centered communication about epilepsy.