This review presents individual reasons for self-reported nonadherence in people with epilepsy (PWE). A literature search was performed on the PubMed/Medline and Scopus databases for studies published up to March 2022. Thirty-six studies were included using the following inclusion criteria: original studies on adults with epilepsy, use of subjective self-report adherence measurement methods, and publication in English. Data were extracted using a standardized data extraction table, including the year of publication, authors, cohort size, study design, adherence measurement method, and self-reported reasons for nonadherence. Self-reported reasons for nonadherence were grouped following the WHO model with the five dimensions of nonadherence. In addition, study characteristics and sociodemographic information are reported. Of the 36 included studies, 81% were observational. The average nonadherence rate was nearly 50%. Across all studies, patient-associated, therapy-associated, and circumstance-related factors were the most frequently reported dimensions of nonadherence. These factors include forgetfulness, presence of side-effects, and history of seizures. Regarding healthcare system factors, financial problems were the most reported reason for nonadherence. Stigmatization and quality of life were the most frequently cited factors influencing nonadherence in the disease- and circumstance-related dimensions. The results suggest that interventions for improving adherence should incorporate all dimensions of nonadherence.
Keywords: adherence; compliance; epilepsy; medication; polypharmacy; seizures; self-report.