Characterization of uncertainty in illness in adult epilepsy patients

The current epilepsy definition includes not only the predisposition for seizure recurrence but the cognitive and psychosocial consequences of the disease. In the last domain, psychiatric comorbidities and stigma are well recognized, while the potential impact of uncertainty and temporal unpredictability, both implicit in the experience of seizures and chronic epilepsy, has not been explored. This study aimed to explore illness-related uncertainty in adult epilepsy patients and to assess its impact on quality of life. A cross-sectional study including 59 epilepsy patients who attended the adult Epilepsy service at the Hospital de Clínicas, Montevideo, was performed. Clinical data and perceptions on the information received about their epilepsy were assessed through ad hoc questionnaires. Uncertainty in illness, intolerance to uncertainty, anxiety, and quality of life were respectively assessed through MUIS-C 17, IUS-12, GAD-7 and QOLIE-31 scales, and associations amongst them were analyzed using non-parametric tests. Moderate levels of uncertainty in illness (46.5 ± 14.9) were found. MUIS-C 17 allowed the identification of unpredictability, information, understanding, and ambiguity as the domains of uncertainty in this adult epilepsy population. We demonstrated an inverse association between uncertainty in epilepsy and quality of life (r -0,324; p = 0,001). Intolerance to uncertainty as a psychological trait was associated with anxiety (p = 0,025), increased uncertainty in illness (r 0,547; p < 0.000) and lower quality of life scores (r -0,44; p < 0.000). The perception of incomplete or unclear information about the disease was associated with higher levels of uncertainty (p = 0,015; p = 0.011), highlighting the potential impact of educational measures.