Non-adherence – why do people not take their epilepsy medications as prescribed?

A new study from Norway published in the online version of the epilepsy journal Epilepsia has investigated the issue of non-adherence to treatment regimens in epilepsy from the patient’s perspective.

Adherence is defined as “the extent to which a person's behaviour taking medication corresponds with agreed recommendations from a health care provider.” Non-adherence is defined as any deviation from the recommendations, both regarding timing and dosage of a prescribed regimen.

Non-adherence to epilepsy treatment plans can result in seizure relapse, status epilepticus, hospital admission and increased health care costs. It may also be related to sudden unexplained death in epilepsy (SUDEP). Despite the significant consequences, rates of non-adherence are high and a number of recent studies have found rates from 21% (France) to 44% (Germany).

This study aimed to determine the extent of both unintentional (e.g. patients forget to take a dose) and intentional (patients consciously decide not to follow the agreed AED treatment regimen) non-adherence among Norwegian people with epilepsy. It also aimed to identify and compare risk factors for unintentional and intentional non-adherence.

Of 1,182 people with epilepsy who completed an online survey, 40% reported that they sometimes or often forget to take their AED as scheduled, and about 30% reported that they consciously chose not to follow the treatment plan agreed upon with their doctor.

The researchers identified a number of independent variables significantly associated with unintentional non-adherence. These included feeling depressed, being younger than the mean age, and having memory problems.

They found that factors associated with intentional non-adherence included feeling depressed, male gender, and perceptions of stigmatization. The most common explanations for intentional non-adherence were side effects; fear of being harmed by AEDs; and that the AEDs had not had an effect on reducing seizures.

The authors conclude that their research “shows a high rate of non-adherence among PWEs [people with epilepsy] in Norway, both unintentional and intentional, and this may result in elevated seizure frequency and related health problems. Measures to reduce nonadherence in PWEs are important and should be tailored to address both unintentional and intentional lack of adherence”.