Epilepsy: Understanding and addressing medication adherence challenges across childhood and adolescence

Medication adherence in pediatric epilepsy is rarely a one-size-fits-all challenge. As children with epilepsy grow from toddlers to teenagers to young adults, the barriers they face in taking their anti-seizure medications (ASMs) shift dramatically, reflecting changes in biology, cognition, social environments, and independence.¹ For healthcare professionals (HCPs), recognizing these developmental nuances is essential to supporting optimal treatment outcomes.

Why medication adherence is particularly challenging across developmental stages in pediatric epilepsy

Childhood development is a dynamic process involving biological, socioemotional, behavioral, and cognitive changes.¹ These transformations naturally affect adherence behaviors. What constitutes a barrier for a preschooler-difficulty swallowing pills-may be irrelevant for an adolescent, while new challenges emerge as children mature.

In youth with epilepsy, approximately 60% of patients exhibit AED nonadherence, as measured by electronic monitoring.¹ The consequences are serious: nonadherence is associated with continued seizures, increased mortality, higher healthcare utilization and costs, and lower health-related quality of life (HRQOL).¹

Childhood development involves qualitative and quantitative changes across biological, socioemotional, behavioral, and cognitive domains, all of which shape how children engage with their treatment regimen over time.¹

As children with epilepsy mature, the confluence of biological, psychological, and social factors influencing adherence² evolves from caregiver behavior in early childhood to the child’s own forgetfulness, and social environment in adolescence.¹ Epilepsy can disrupt cognition, education, and interpersonal relationships at every stage³, meaning that barriers to adherence are neither static nor universal; they vary significantly based on the child’s age and developmental stage.^1,2

Prior longitudinal research has demonstrated that certain adherence barriers remain stable over time; however, understanding which barriers become more or less salient at different developmental epochs has not been systematically studied until recently.¹ In adults with newly treated epilepsy, group-based trajectory modeling identified four distinct adherence trajectories: early adherent (60%), early nonadherent (18%), late adherent (11%), and late nonadherent (11%)—underscoring that adherence is a dynamic, not static, process.⁵

Common and impactful barriers to ASM adherence from toddlerhood through young adulthood

A comprehensive examination of 274 participants, including 269 caregivers of youth with epilepsy between the ages of two and 25 years, and 77 adolescents and young adults between the ages of 13 to 25 years; revealed both continuity and discontinuity in adherence barriers across development.¹ These findings are consistent with broader evidence: barriers such as difficulty swallowing medications, forgetfulness, and medication refusal have been identified as recurring factors across multiple global studies.^2,3

Early childhood (Ages 2–5 years)

Among preschoolers, the most highly endorsed barriers reported by caregivers were disliking the taste of medication, parent forgetfulness, and child refusal to take medications.¹ Approximately 82% of children in this age group experienced at least one adherence barrier.¹

These barriers reflect the developmental reality of early childhood: young children rely almost exclusively on caregivers for medication administration, have limited understanding of their condition, and may resist unpleasant-tasting medications. Notably, 55% of caregivers of 2–5 year olds endorsed ‘dislike taste’ and 52% reported parent forgetfulness—both significantly higher than in older age groups.¹

School-age children (Ages 6–12 years)

School-aged children faced similar barriers: disliking taste, parent forgetfulness, and difficulty swallowing were most commonly endorsed.¹ About 80% of this group experienced at least one barrier.¹

Interestingly, caregiver forgetfulness remained highly prevalent (52%), suggesting that even as children mature, parents continue to bear primary medication management responsibility.¹ Difficulty swallowing pills emerged as more salient in this age group compared to others. This is consistent with systematic review findings identifying swallowing difficulties as a persistent and stable barrier across childhood.^2,3

Adolescence (Ages 13–17 years)

Among adolescents, barriers became more complex. Caregivers identified disliking taste, embarrassment, and swallowing difficulties as primary concerns.¹ However, adolescents themselves reported different priorities: disliking taste, forgetfulness, and running out of medications.¹

This discrepancy between parent and adolescent perspectives reflects the developmental shift toward independence. Approximately 73% of parents and 82% of adolescents reported at least one barrier¹, suggesting that as adolescents assume more responsibility for their medication regimen, new barriers emerge—particularly those related to forgetfulness and logistical challenges like obtaining refills. The epilepsy-related stigma in adolescents may further compound adherence challenges, as perceived stigma is significantly associated with higher non-adherence.⁶

Notably, 45% of adolescents aged 13–17 endorsed ‘dislike taste’ compared to 0% of young adults aged 18–25,¹ suggesting this barrier becomes less salient with maturation.

Young adulthood (Ages 18–25 years)

Young adults faced distinct challenges. Caregivers of young adults identified difficulty getting to the pharmacy, competing activities, and medication refusal as primary barriers.¹ Young adults themselves endorsed forgetfulness, running out of medications, and difficulty accessing pharmacy services.¹

These barriers reflect increasing autonomy and life complexity—managing healthcare independently, balancing competing responsibilities, and navigating insurance and pharmacy systems without parental oversight. Research in adult epilepsy populations similarly identifies forgetfulness, complicated regimens, and poor doctor–patient communication as drivers of nonadherence.⁴

Barriers with continuity across development

Some barriers persisted across all age groups without significant variation. These included difficulty obtaining medications from pharmacies, embarrassment about taking medications, and running out of medication.¹ However, their relative impact on clinical outcomes varied considerably by developmental stage.

Developmentally tailored interventions to improve medication adherence

Given the changing nature and impact of barriers across development, adherence interventions must be appropriately matched to developmental stage. The evidence base for adherence-promoting interventions in pediatric epilepsy is growing: a systematic review of eight studies (six randomized controlled trials) found that educational and behavioral interventions showed variable but meaningful improvements in adherence, ranging from 2–20% up to 73.9% post-intervention.²

Early childhood interventions (Ages 2–5 years)

• Addressing parent forgetfulness:
  Because caregiver forgetfulness is the second most important predictor of nonadherence in this age group,¹ interventions should focus on parental support. For parents with lower health literacy, providing clear verbal and written instructions about treatment plans is essential.¹ For those simply overwhelmed by competing demands, visual or auditory reminders (text messages, smartphone apps, medication alarms) can significantly improve consistency.¹

• Managing medication taste and refusal:
  For young children who refuse medications or dislike taste, parent management strategies commonly used for behavioral concerns may be effective.¹ These could include positive reinforcement for medication-taking, structured routines, and collaboration with pharmacists to identify more palatable formulations when available.

• System-level support:
  Ensuring adequate access to medications is critical. HCPs should help families develop strategies to avoid running out of medications: keeping extra doses at home, facilitating insurance coverage, or using mail/delivery services.¹

School-age interventions (Ages 6–12 years)

• Continuing caregiver support:
  Parent forgetfulness remains highly prevalent (52%) among school-age children,¹ necessitating continued focus on reminder systems and adherence tools (pill organizers, routine-based dosing). Pharmacist-led educational interventions have demonstrated improved caregiver knowledge in this age group.²

• Addressing swallowing difficulties:
  As difficulty swallowing becomes more salient, HCPs should assess whether children can safely transition from liquid to pill formulations or whether extended-release or alternative formulations might reduce dosing frequency. Simplifying medication regimens—such as through monotherapy where clinically appropriate—is associated with significantly higher adherence odds in pediatric populations.³

• Early education:
  Although parents maintain primary responsibility, school-age children can begin learning about their condition and why medication is important. Age-appropriate education may foster better cooperation and lay groundwork for future self-management. Video animation-based educational interventions have shown improved knowledge and adherence outcomes in this age group.²

Adolescent interventions (Ages 13–17 years)

• Targeting medication refusal:
  Because adolescent refusal strongly predicts poor adherence and seizure control,¹ interventions must go beyond simple reminders. Motivational interviewing—a counseling approach that addresses medication-taking ambivalence—may help adolescents explore their own reasons for adherence.^1,2 Family therapy or behavioral health support may be appropriate when oppositional behavior significantly impacts medication-taking.

• Managing competing activities:
  Adolescents face increasingly complex social and academic schedules. Interventions should help them integrate medication-taking into daily routines despite competing demands. Smartphone apps and text messaging-based interventions have shown preliminary feasibility for improving adherence in this age group.² Simplified regimens, once-daily dosing when clinically appropriate, and peer support may all prove helpful.

• Addressing taste barriers:
  Despite lower prevalence, medication taste remains the first or second most important predictor of multiple outcomes among adolescents.¹ HCPs should not dismiss this barrier simply because it seems ‘minor.’ Exploring alternative formulations or discussing strategies to minimize unpleasant taste is warranted.Shared decision-making and gradual independence:
  Supporting the developmentally appropriate transition from parent-managed to adolescent-managed medication is crucial. Research demonstrates that the allocation of treatment responsibility shifts during these years.¹ Collaborative approaches that involve both adolescents and parents—clarifying roles, responsibilities, and expectations—can prevent gaps in medication management during this transition. In adult populations, neurologist involvement has been identified as a key modifiable factor associated with better adherence trajectories, underscoring the value of specialist care during this vulnerable transition period.⁵

• Shared decision-making and gradual independence:
  Supporting the developmentally appropriate transition from parent-managed to adolescent-managed medication is crucial. Research demonstrates that the allocation of treatment responsibility shifts during these years.¹ Collaborative approaches that involve both adolescents and parents—clarifying roles, responsibilities, and expectations—can prevent gaps in medication management during this transition. In adult populations, neurologist involvement has been identified as a key modifiable factor associated with better adherence trajectories, underscoring the value of specialist care during this vulnerable transition period.⁵

Young adult interventions (Ages 18–25 years)

• Emphasizing independence skills:
  Young adults face logistical barriers: accessing pharmacies, managing insurance, remembering refills without parental oversight. Interventions should focus on building these practical skills—setting up automatic refills, using pharmacy delivery services, establishing reminder systems.¹

• Addressing forgetfulness:
  Self-reported forgetfulness is common among young adults.¹ Digital tools (smartphone apps, medication management platforms) tailored to this tech-savvy age group may be particularly effective. In adult populations broadly, the evidence supports behavioral interventions incorporating reminders and implementation intention strategies as superior to education and counseling alone for short-term adherence improvement.⁴

• Facilitating healthcare navigation:
  Many young adults transitioning from pediatric to adult care struggle navigating the healthcare system independently. Care coordination support, clear communication about insurance coverage, and assistance accessing specialty care can reduce medication access barriers. Research in adults confirms that regular neurologist visits are associated with significantly reduced odds of early nonadherence—a finding with direct implications for ensuring continuity of specialist care during the adolescent-to-adult transition.⁵

Routine assessment of adherence barriers to guide personalized care

Perhaps the most important clinical implication is this: adherence barriers should be routinely assessed from toddlerhood through young adulthood.¹ The prevalence, nature, and clinical impact of barriers change as children develop, meaning that a barrier identified at one visit may resolve or new barriers may emerge.

Using validated screening tools

Brief, validated measures like the Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ) provide time-efficient, empirically sound methods for identifying barriers.¹ These tools can be completed by caregivers (for younger children) or by adolescents and young adults themselves, capturing their unique perspectives. In adults, the Morisky Medication Adherence Scale (MMAS) has been widely used, though objective measures such as electronic monitoring systems (MEMS) and medication possession ratios (MPR) offer superior accuracy for research and clinical assessment.⁴

Focusing on high-impact barriers

Not all barriers are equal. Some—like running out of medications—have relatively low prevalence but massive impact on outcomes when present.¹ Others—like medication taste—may seem minor but strongly predict adherence, seizures, and HRQOL at certain developmental stages.¹

HCPs should focus on barriers most predictive of poor outcomes for a given developmental period rather than simply targeting the most commonly endorsed barriers. This targeted approach maximizes intervention efficiency.

Engaging multidisciplinary support

Addressing adherence barriers often requires expertise beyond the prescribing physician. Pharmacists can help identify palatable formulations and simplify regimens. Social workers and care coordinators can address logistical and insurance barriers. Psychologists can provide behavioral intervention for medication refusal or motivational interviewing for adolescent ambivalence. School nurses can support adherence during school hours. Patient-oriented treatment programs and clear communication strategies promoting self-management are essential to maximizing outcomes while minimizing economic costs.⁴

Creating developmentally sound interventions

Adherence interventions must be tailored to developmental stage. Parent-focused reminder systems appropriate for preschoolers will not address adolescent forgetfulness driven by competing activities and independence-seeking. Conversely, motivational interviewing aimed at resolving medication ambivalence makes little sense for a three-year-old who dislikes medication taste.

Evidence is emerging for several developmentally tailored approaches. For young children with newly diagnosed epilepsy, family-based education and problem-solving interventions—such as the Supporting Treatment Adherence Regimens (STAR) program—show promise, demonstrating 20% improved adherence over education-only controls at 12-month follow-up.² For adolescents, interventions incorporating motivational interviewing, behavioral strategies, and family engagement demonstrate feasibility and preliminary efficacy.^1,2

Monitoring adherence objectively when possible

While self-report and pharmacy refill data provide useful information, electronic monitoring systems offer objective adherence data that can inform clinical decision-making. For children with continued seizures despite apparently adequate dosing, poor adherence should be considered—particularly if known barriers are present. Objective adherence data can help distinguish true treatment failure from nonadherence, guiding appropriate next steps.

In adults, studies using objective measures (medication possession ratio <80%) find nonadherence in approximately 26–79% of patients—levels comparable to pediatric data and confirming that this is a lifelong management challenge, not limited to childhood.⁴

Implications for clinical practice

Medication nonadherence represents a critical, modifiable contributor to poor outcomes in pediatric epilepsy. The evidence is clear: barriers to adherence change across development, and their impact on clinical outcomes varies by age.¹

For HCPs, several practice points emerge:

First, normalize adherence assessment. Brief barrier screening should be as routine as asking about seizure frequency—incorporated into every epilepsy visit from diagnosis through young adulthood¹

Second, recognize that low-prevalence barriers can have high impact.¹ Ask not only about common barriers but specifically about running out of medications, access to pharmacy services, and other logistical challenges that powerfully predict nonadherence when present.

Third, tailor interventions to developmental stage.¹ Parent forgetfulness interventions differ from adolescent forgetfulness interventions. Medication taste matters differently at age 4 versus age 14. Treatment approaches must reflect these developmental realities.

Fourth, leverage multidisciplinary resources.¹ Social workers and care coordinators, can help minimize the impact of logistical barriers, such as difficulty obtaining refills from pharmacies.

Fifth, support the transition to independent self-management during adulthood.⁷ Gradually shift the responsibility for healthcare tasks to the patient ; encouraging practice in scheduling appointments, filling prescriptions, and managing medications with the support of technology tools can foster self-reliance and help prevent declines in adherence during this transition.⁷

Finally, remember that improving adherence is not about demanding compliance. It is about understanding barriers—whether logistical, cognitive, emotional, or developmental—and collaboratively addressing them.² This partnership approach respects the child’s and family’s autonomy while providing the support needed for treatment success.

Conclusion

Adherence to anti-seizure medications is imperative for optimal outcomes in pediatric epilepsy, yet achieving consistent adherence remains challenging throughout childhood and adolescence. Barriers are characterized by both continuity and discontinuity across development: some persist across all ages while others wax and wane based on developmental stage. Critically, barriers differentially predict adherence, seizure control, and HRQOL depending on the child’s age.¹

Routine assessment of adherence barriers—using brief validated tools—should be standard practice from toddlerhood through young adulthood.¹ Interventions must be developmentally tailored and targeted to barriers most predictive of poor outcomes for each developmental stage.¹ A collaborative, multidisciplinary approach¹ that addresses not just the most common barriers but the most impactful ones offers the best chance of optimizing medication adherence and, ultimately, improving the lives of children and adolescents living with epilepsy.

This article was written with the assistance of generative AI technology and reviewed for accuracy.

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