Detecting Reasons for Nonadherence to Medication in Adults with Epilepsy: A Review of Self-Report Measures and Key Predictors

Abstract

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.

Adherence to anti-seizure medications in the Swedish Prospective Regional Epilepsy Database and Biobank for Individualized Clinical Treatment (PREDICT)

“…A prevalence of 39 % non-adherence is lower than what has been described in many studies, and lower than the estimated average of 50 % in studies on self-reported adherence in the systematic review by Mendorf et al [10] . It is difficult to compare the statistics between studies, due to the extensive methodological variations.…”

“…Sub-optimal adherence is common in people with epilepsy (PWE), but the prevalence varies largely between studies depending on the used methods and definitions of adherence. A review published in 2017 found sub-optimal adherence in 26–79 % of patients in 17 studies [9] , and a systematic review published in 2022 on studies using different self-report measures for adherence found rates of sub-optimal adherence between 21 and 95 % in 36 studies, with an estimated average rate of almost 50 % [10] . The most commonly mentioned self-reported reason for non-adherence in the latter review was forgetfulness.…”

Adherence to Epilepsy’s Medical Recommendations

“…In a recently published study in Brazilian patients with epilepsy, forgetfulness was also a major factor responsible for non-adherence. Another important factor was the adverse effects of the anti-epileptic drugs taken [ 28 , 36 , 37 ]. To minimize the risk of skipping a dose, it is recommended to use pill organizers, taking medication during meals and using reminder mobile applications [ 12 , 38 , 39 , 40 , 41 ].…”

“…The patient’s personal thoughts about the need to take the medicine, the benefits of taking it, and the concerns about possible side effects and costs associated with taking the drug often determine the level of compliance with medical recommendations [ 25 , 26 , 27 , 28 ].…”

Temporal relationship between levetiracetam nonadherence and breakthrough seizures in a preclinical model of temporal lobe epilepsy

“…4 Reasons for nonadherence are often complex and multilayered, ranging from forgetfulness to concerns about medication side effects, lifestyle factors, or financial constraints. [5][6][7] Estimates indicate that 25%-75% of adults with epilepsy may not optimally adhere to their ASM regimen. 4,6,8,9 Challenges arise in clinical decision-making when patients fail to communicate missed doses or misremember them, 10,11 potentially resulting in unwarranted medication regimen alterations.…”