Barriers and facilitators of antiseizure medication adherence: a qualitative study among persons with epilepsy in Pakistan

TL;DR

This study explores why people with epilepsy in Pakistan struggle to stick to their medication and what might help them do better.

Contribution

The study identifies specific barriers and facilitators to ASM adherence in Pakistan through qualitative insights from patients and caregivers.

Findings

Stigma, psychological issues, and financial instability hinder medication adherence among persons with epilepsy.

Free treatment facilities and availability of healthcare providers support better adherence.

Medication side effects and unavailability of ASMs are major obstacles to adherence.

Abstract

Medication adherence is crucial to achieving optimal health outcomes in persons with epilepsy. Approximately 52.1% of persons with epilepsy are sub-optimally adherent to antiseizure medications (ASMs) in Pakistan, leading to increased risk of drug resistance and mortality. Achieving adherence in Pakistan is challenging because of socioeconomic, psychological, and cultural factors. In this qualitative study, we identified the factors that hinder or support adherence to medication regimens and explored the lived experiences of persons with epilepsy regarding adherence to ASMs.

Twenty-eight qualitative interviews were conducted with persons with epilepsy who visited the largest hospital in Islamabad, Pakistan Institute of Medical Sciences (PIMS), from March to June 2024. Clinically diagnosed persons with epilepsy with their caregivers (CGs), were invited to participate in this study. This study employed a phenomenological study design and purposive sampling method to achieve data saturation. Interviews averaged 30 min in length and were conducted using a semi-structured guide. Interview questions were open-ended and designed to elicit barriers and facilitators to ASMs adherence among persons with epilepsy and their CGs. All interviews were audio-recorded in Urdu and transcribed into English. The qualitative responses were analyzed using a thematic analysis technique emphasizing the dominant themes.

Three themes emerged surrounding issues of persons with epilepsy and their CGs in adhering to ASMs, encompassing factors related to the persons with epilepsy, healthcare, and medications. Persons with epilepsy related factors includes stigma, psychological issues, financial instability, comorbidities, and family support. Healthcare-related factors include short consultation times, free-of-cost treatment facilities, and availability of healthcare providers. Medication-related factors include non-availability of ASMs, side effects, and perceived treatment efficacy.

The findings of this study can be valuable for policymakers in formulating policies for epilepsy care and treatment. Enhancing the reported facilitators, such, providing free-of-cost treatment facilities, and the availability of ASMs in poor-resourced areas, will improve health outcomes and ensure the continuum of epilepsy care among persons with epilepsy residing in Pakistan.

The online version contains supplementary material available at 10.1186/s12883-025-04433-9.