Study Reveals Key Factors to Treatment Access Barriers and Medication Adherence in Pediatric Epilepsy


According to a recent cross-sectional study on pediatric patients with epilepsy in Western China, most patients’ caregivers had treatment access barriers, especially for making appointments, obtaining diagnosis and examination results, and having a response from the care team.

Newly published in Epilepsy & Behavior, a cross-sectional study conducted in Western China on pediatric patients with epilepsy and their caregivers revealed a high demand for disease treatment despite relatively low medication adherence, with a range of factors influencing this outcome. These findings suggest medical personnel strengthen health education and regular follow-ups for patients may help to improve medication adherence.1

Among 1,847 pediatric patients with epilepsy, a univariate analysis showed that age (t =–3.485, P = .001), total monthly household income (t =–2.213, P = .027), annual medical expenses (t = 4.396, P = .000), and medical expenses payment (t =–6.918, P = .000) impacted the patients’ treatment access barriers scores. In addition, being newly diagnosed (t = 2.500, P = .013), a family history of epilepsy (t =−2.244, P = .025), comorbidity (t = 4.058, P = .000), frequency of seizures in the past month (t = 5.818, P = .000), and attitude toward seizures (t = 5.642, P = .000) also affected participants’ scores to treatment access.

Clinical Takeaways

  • Tailored health education and regular follow-ups are crucial to improving medication adherence and meeting treatment needs in pediatric epilepsy.
  • Financial burdens significantly impact treatment access barriers, emphasizing the importance of addressing economic challenges to ensure timely and effective care.
  • Having social support systems is essential for patients with pediatric epilepsy to create supportive environments and enhance medication adherence.

In the multiple linear regression analysis, results showed that younger age of pediatric patients (β = –.059; standard error [SE] = .035; P = .013), difficulty paying medical expenses (β = –.118; SE = .318; P = .000), and comorbidities (β = .068; SE = .283; P = .005) had an association with patients having higher treatment access barriers scores. At the same time, higher frequency of seizures in the past month (β = .104; SE = .118; P = .000), and attitude toward seizures (β = .117; SE = .278; P = .000) were also associated with high treatment access barriers scores.

“Possible reasons for these findings could be that parents of younger patients may be highly concerned about the disease and worried about its influence on children’s growth and development, resulting in higher treatment access barriers. Also, patients with low income had a heavy financial burden for treatment, and it was difficult to receive timely examination and treatment, meaning the demand for treatment was also high. Additionally, the severity of the disease and more frequent epileptic seizures may also affect treatment access barriers, and parents of patients with comorbidities or frequent/severe seizures may pay more attention to the disease, resulting in higher demand for treatment,” senior author Xi Huang, MSN, nurse, department of neonatal nursing, West China Second University Hospital, Sichuan University/West China School of Nursing, Sichuan University, in China, and colleagues wrote.1

In this study, investigators consecutively sampled pediatric patients with epilepsy from pediatric neurology clinics at West China Second Hospital of Sichuan University between October 2022 and April 2023. Treatment access barriers were assessed using a scale that was self-designed with the Morisky Medication Adherence Scale used to assess medication adherence. The researchers used either a multivariate linear or logistic regression analyses to determine influencing factors behind both treatment access barrier and medication adherence.

READ MORE: NRTX-1001 Shows Seizure Suppression in Preclinical Drug-Resistant Focal Epilepsy Models

“Treatment access barriers and medication adherence were both important factors that affected the therapeutic effect. In clinical practice, these influencing factors are very important for the management of medication adherence. Therefore, medical staff should pay more attention to these factors to meet treatment access barriers and improve medication adherence among children with epilepsy, especially in the clinical diagnosis and treatment of these children,” Huang et al noted.1 Among the total sample population, 62% (n = 1145) of the patients showed good adherence, and 38% (n = 702) showed poor adherence, with an average score of 3.37 (±0.915).

In the univariate analysis, 16 variables had statistically significant associations with medication adherence scores including age (F = 114.051; P = .000), being an only child (χ2 = 17.256; P = .000), caregiver (χ2 = 5.185; P = .023), caregiver’s age (χ2 = 8.398; P = .038), caregiver’s education level (χ2 = 32.607; P = .000), and place of residence (χ2 = 22.473; P = .000). The other variables associated with the medication adherence scores included parents’ marital status (χ2 = 9.733; P = .002), total monthly household income (χ2 = 9.089; P = .011), payment type for medical expenses (χ2 = 16.803; P = .001), annual medical expenses (χ2 = 10.422; P = .015), medical expenses payment (χ2 = 6.908; P = .009), being newly diagnosed (χ2 = 71.102; P = .000), comorbidities (χ2 = 16.440; P = .000), frequency of seizures in the past month (χ2 = 24.734; P = .000), attitude toward seizures (χ2 = 5.200; P = .023), and total treatment access barriers score (χ2 = 5.196; P = .023).

In the logistic regression analysis, the findings showed that age (OR, 1.117; 95 % CI, 1.084–1.151), being an only child (OR, 0.749; 95 % CI, 0.604–0.927), place of residence (OR, 0.703; 95 % CI, 0.535–0.923), and annual medical expense (OR, 0.615; 95 % CI, 0.387–0.977) were associated with medication adherence. At the same time, being newly diagnosed (OR, 1.685; 95 % CI, 1.344–2.113), and comorbidities (OR, 0.783; 95 % CI, 0.629–0.974) were also observed as associated with medication adherence among the patients.

“Potential strategies could be that medical staff should provide systematic and comprehensive health education to patients and their families to ensure they understand knowledge related to the disease and antiseizure medications, including the therapeutic effect, adverse effects of drugs, necessity of taking drugs, drug dosage, time and frequency of medication, and matters needing attention. Additionally, regular follow-up and communication with patients or their guardians by telephone or online is necessary to ask them about their treatment needs and resolve any confusion related to illness or medication,” Huang et al noted.1 “It is also necessary to establish and strengthen social support systems for patients with epilepsy. Children’s families, friends, schoolmates, and teachers should offer more care to these children, ensure they are not discriminated against, provide them with good living and learning environments, and increase their confidence in treating epilepsy, which are all important for improving their medication adherence.”

All told, some limitations that should be considered include that participants in this study were only from West China Second Hospital, hence this might limit the extrapolation of the produced results. The authors then noted that it is necessary to conduct multisite studies of medication adherence among pediatric patients with epilepsy to confirm the findings from the current study. In addition, the investigators only followed patients’ medication adherence at the time of seeing a provider and did not track the changing trends of adherence. Therefore, the authors noted that further prospective research needs to be designed with longer study periods and multiple follow-up points. Another limitation noted was the measurement of adherence which might have underestimated or overestimated the status of medication adherence in the patients since it was based in accordance with the scale score.

1. Yang C, Liu J, Zhang L, Huang X. Treatment access barriers and medication adherence among children with epilepsy in western China: A cross-sectional study. Epilepsy Behav. Published online November 7, 2023. doi:10.1016/j.yebeh.2023.109511
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