Support is Critical: Identifying the Roles of Decision-Making and Parental Anxiety on Medication Adherence in Pediatric Epilepsy

Commentary

Medication compliance can be challenging in any chronic pediatric disorder (and non-pediatric disorder) due to a variety of factors, such as challenging child behaviors, independence-seeking behaviors, communication barriers such as low medical literacy or provider communication issues, financial barriers, and others. ¹ When the potential consequences of medication noncompliance are breakthrough seizures and status epilepticus, increased hospitalizations, and increased mortality, the importance of medication compliance and reducing the barriers to adherence is dire.^2,3 Social support can be characterized as the potential or perceived resources that are available or services being provided to an individual. ⁴ Social support can vary depending on the circumstances (ie, such as caregiver vs patient role) and is typically a combination of resources which may include emotional support, enhanced education/information on the disease state, and practical/financial support. ⁵

Yang et al evaluated the impact of social support on communication and decision-making, treatment satisfaction, and caregiver anxiety and the effects on medication adherence in pediatric epilepsy. ⁶ The authors performed a cross-sectional quantitative study of caregivers of children with epilepsy seen three healthcare facilities in China. The goal was to evaluate how the previously mentioned factors impact adherence, directly and indirectly, and the relationships between these factors by developing a hypothetical path model with medication adherence as the primary outcome variable. Path analysis is a form of multiple regression that entails creation of a path diagram evaluating the relationships between variables. The authors then used structural equation modeling (SEM) to allow for simultaneous analysis of the multiple mediating and moderating effects on medication adherence. The authors used a combination of self-designed scales, that is, Treatment Satisfaction Scale (SAT), Communication and Decision-Making Scale (CDMS), and Adherence to Medication scale (ADH), and available instruments, such as the Generalized Anxiety Disorder-7 (GAD-7) and Perceived Social Support Scale (PSSS).

The study included 1056 patients with a mean age of 8.86 years (sd = 3.99 years). Approximately half (50.5%) of the cohort was newly diagnosed with epilepsy and 98.5% of caregivers were parents. For those patients with established epilepsy, the minimum duration of epilepsy was 3 months per study inclusion criteria, with no information provided on the duration of epilepsy in included patients. Comorbidities were identified in 57.1% of patients (n = 603), including 22% with developmental delay and only a handful patients with ADHD (3.4%, 36 cases), intellectual disability (2.2%, 23 cases), depression or anxiety (0.4%, 4 cases), and autism (0.2%, 2 cases).

Based on scores from caregiver scales, 38.7% (n = 409) of patients exhibited poor treatment adherence, 12.9% (n = 36) of caregivers had low social support, 56.6% (n = 598) had moderate social support, and 30.5% (n = 322) had high social support. Medication adherence demonstrated a significantly positive correlation with satisfaction, social support, and communication/decision-making (p < 0.01 for all correlations). No significant correlation was found with caregiver anxiety (r = -0.058, p > 0.05), which the authors suggested indicated that indirect effects of anxiety were responsible for perceived effects.

Structural equation model analysis demonstrated that social support and communication and decision-making participation significantly improved medication adherence through direct and indirect pathways with direct positive effects seen for both. Satisfaction also significantly promoted medication adherence. Treatment satisfaction partially mediated the relationships between social support, communication and decision-making participation, and medication adherence via significant indirect effects of social support on satisfaction which enhanced medication adherence. Overall, total effects were positive on medication adherence. Caregiver anxiety was shown to significantly negatively moderate the relationships between social support, communication and decision-making participation, and treatment satisfaction and weakened the positive effects of these on medication adherence (Figure 1). Overall, these results demonstrated clear relationships between these factors, with total positive effects of caregiver support, communication and decision-making participation, and treatment satisfaction on medication adherence, while caregiver anxiety negatively impacts these relationships, potentially contributing to reduced medication adherence.

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Figure 1.

Path relationship results: Solid lines represent significant relationships on path analysis and significant direct effects of perceived social support, communication decision making, and satisfaction on medication adherence. Dashed lines represent significant indirect effects and mediating effects of parental support and communication and decision making on satisfaction with indirect effects on satisfaction positively impacting medication adherence. Dotted lines represent moderating effects of parental anxiety, with “X” representing negative effects, on the relationships between social support, communication decision making, and satisfaction on medication adherence.

The study findings, while not surprising, are important. The personal experience of caregivers of children with chronic medical conditions is impacted by numerous factors including social support, disease burden, medical barriers, caregivers’ coping abilities. ⁷ Given the potential complexity of an individual's epilepsy journey, it is not unexpected that enhancing social support of caregivers improves the overall experience. Qualitative studies have previously identified that for caregiver decision-making in epilepsy important factors include being informed and knowledgeable about epilepsy and therapies, a sense of responsibility, emotional and social support, personal beliefs, and resources. ⁸

Some considerations of the study by Yang et al would be the generalizability of the findings to other populations, as there could be cultural and location-specific factors which contributed to their findings. Part of social support can include resources and financial support, which was not really explored in this study. If there are additional stressors due to a lack of financial resources, this could also contribute to increased anxiety and thus weaken the effects seen on medication adherence. It would have been interesting if the authors explored if there were common factors among the patients with the lowest level of social support, which only made up a minority of the caregivers of the included patients.

The authors included patients with a previous diagnosis of epilepsy as well as new onset epilepsy, however as previously noted, the minimum required length of epilepsy history was 3 months, which is still quite early in the potential disease course. One big question is how can these results be applied to patients with severe epilepsies and numerous comorbidities? This study excluded patients who had severe cognitive or developmental concerns including autism, cerebral palsy, or intellectual disability, as well as those with other chronic medical conditions. That would indicate that this study did not really include patients with intractable epilepsy, at least not based on what is reported. This would certainly impact the study findings given that patients with refractory epilepsy likely have more medical complexity and needs, which further could increase caregiver anxiety and an increased need for social support. The rates of comorbidities seen in this cohort was 57.1%, and rates of comorbidities were lower than may be expected, particularly for patients with comorbid ADHD, depression, anxiety, and autism based on prior literature. ⁹ This may skew the sample towards a population that is less impacted by comorbidities and thus could alter generalizability of the study.

This question remains regarding differences between patient and caregiver populations in children with well-controlled epilepsy and in children with refractory epilepsy and developmental and epileptic encephalopathies. Is there better medication adherence with increased medical complexity, or is there an increased impact of social support on medication adherence in a more severely affected population? Future studies could potentially use similar modeling to assess the impact of social support on caregivers of children with intractable epilepsy and treatment adherence. Regardless, this study highlights the importance of assessing support for families and identifying care gaps in order to optimize adherence to therapies for children with epilepsy.