Identifying the barriers to antiepileptic drug adherence among children with newly diagnosed epilepsy
DOI:
https://doi.org/10.18203/2349-3291.ijcp20251864Keywords:
Barriers, Epilepsy, Adherence, Children, Compliance, Antiepileptic drugAbstract
Background: Epilepsy is a common neurological disorder with significant health consequences. Adherence to antiepileptic drugs (AEDs) is vital for effective seizure control. Poor adherence is associated with increased hospitalizations, reduced quality of life and higher mortality. In children, ensuring adherence is especially challenging, involving caregivers, the child and clinicians. This study aimed to assess the prevalence and factors associated with AED non-adherence in children aged 3 months to 18 years with newly diagnosed epilepsy.
Methods: A Prospective, longitudinal observational study was conducted in 120 children with newly diagnosed epilepsy in the Department of pediatrics, LLRM Medical college, Meerut, from October 2022 to September 2023. Adherence was assessed using the 8-item Morisky Medication Adherence Scale (MMAS-8) and factors influencing non-adherence were evaluated using the Pediatric Epilepsy Medication Self- Management Questionnaire during follow-up interviews.
Results: AED non-adherence was observed in 48% of participants. Factors associated with non-adherence: Socio-demographic: Rural residence (53%), lower parental education (75%), Clinical: frequent seizures (74%), polytherapy (60.5%), Caregiver-related: Poor treatment knowledge (71%), forgetfulness (90.5%), running out of medication (80%), lack of belief in treatment (75%) and Child-related: Refusal to take medication (87.6%).
Conclusions: Nearly half of the children with epilepsy were non-adherent to AEDs. Major barriers included caregiver forgetfulness, run out of medication and child refusal. Addressing these modifiable factors is essential to improve adherence and health outcomes in pediatric epilepsy.
Metrics
References
World Health Organization. Epilepsy: Key facts. 2023. Available at https://www.who.int/news. Accessed on 21 January 2025.
Sridharan R, Murthy BN. Prevalence and pattern of epilepsy in India. Epilepsia. 1999;40(5):631–6. DOI: https://doi.org/10.1111/j.1528-1157.1999.tb05566.x
Goel D, Agarwal A, Dhanai JS. Comprehensive rural epilepsy surveillance programme in Uttarakhand state of India. Neurol India. 2009;57(3):355–6. DOI: https://doi.org/10.4103/0028-3886.53274
Patel M, Goel AD, Saini L. Prevalence of pediatric and adolescent epilepsy in India: A systematic review and meta-analysis. Seizure. 2025;127:36– 43. DOI: https://doi.org/10.1016/j.seizure.2025.02.012
Gardiner P, Dvorkin L. Promoting medication adherence in children. Am Fam Physician. 2006;74(5):793-8.
Ramsey RR, Zhang N, Modi AC. The stability and influence of barriers to medication adherence on seizure outcomes and adherence in children with epilepsy over 2 years. J Pediat Psychol. 2018;43(2):122-32.
Paschal AM, Mitchell QP, Wilroy JD, Hawley SR, Mitchell JB. Parent health literacy and adherence-related outcomes in children with epilepsy. Epilepsy Behav. 2016;56:73–82. DOI: https://doi.org/10.1016/j.yebeh.2015.12.036
Loiselle K, Rausch JR, Modi AC. Behavioural predictors of medication adherence trajectories among youth with newly diagnosed epilepsy. Epilepsy Behav. 2015;50:103-7. DOI: https://doi.org/10.1016/j.yebeh.2015.06.040
Samsonsen C, Reimers A, Brathen G, Helde G, Brodtkorb E. Nonadherence to treatment causing acute hospitalizations in people with epilepsy: an observational, prospective study. Epilepsia. 2014;55(11):125–8. DOI: https://doi.org/10.1111/epi.12801
Das AM, Ramamoorthy L, Narayan SK, Wadwekar V. Barriers of drug adherence among patients with epilepsy: in tertiary care hospital, South India. J Caring Sci. 2018;7(4):177-81. DOI: https://doi.org/10.15171/jcs.2018.027
Dean AG, Sullivan KM, Soe MM. OpenEpi: Open Source Epidemiologic Statistics for Public Health, Version 3.01 Available at http://www.OpenEpi.com. Accessed on 21 February 2025.
Modi AC, Monahan S, Daniels D, Glauser TA. Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire. Epilepsy Behav. 2010;18(1-2):94–9. DOI: https://doi.org/10.1016/j.yebeh.2010.03.009
Al-Qazaz HKh, Hassali MA, Shafie AA, Sulaiman SA, Sundram S, Morisky DE. The eight-item Morisky Medication Adherence Scale MMAS: translation and validation of the Malaysian version. Diabetes Res Clin Pract. 2010;90(2):216–21. DOI: https://doi.org/10.1016/j.diabres.2010.08.012
Dima SA, Shibeshi MS. Antiepileptic drug adherence in children in southern Ethiopia: A cross sectional study. PloS One. 2022;17(2):263821. DOI: https://doi.org/10.1371/journal.pone.0263821
Tan JW, Khoo TB, Burharudin NF, Mohamed Shah N. Medication self-management among parents of children with epilepsy at a tertiary care center in Malaysia. Epilepsy Behav. 2020;111:107317. DOI: https://doi.org/10.1016/j.yebeh.2020.107317
Gutierrez-Colina AM, Smith AW, Mara CA, Modi AC. Adherence barriers in pediatric epilepsy: From toddlers to young adults. Epilepsy Behav. 2018;80:229-34. DOI: https://doi.org/10.1016/j.yebeh.2018.01.031
Ramsey RR, Zhang N, Modi AC. The stability and influence of barriers to medication adherence on seizure outcomes and adherence in children with epilepsy over 2 years. J Pediatr Psychol. 2018;43(2):122–32. DOI: https://doi.org/10.1093/jpepsy/jsx090
Carbone L, Zebrack B, Plegue M, Joshi S, Shellhaas R. Treatment adherence among adolescents with epilepsy: what really matters. Epilepsy Behav. 2013;27(1):59–63. DOI: https://doi.org/10.1016/j.yebeh.2012.11.047