Parent and family stress factors predict health-related quality in pediatric patients with new-onset epilepsy

Health-related quality of life (HRQOL) is an important patient-reported outcome that has been defined in a number of ways. For example, a recent review of HRQOL measures used in the pediatric literature revealed that measures purported to assess HRQOL (i.e., defined as “a child's goals, expectations, standards or concerns about their overall health and health-related domains”) also assess components of other related constructs such as patient functioning, disability, and health and general quality of life.1 In the current manuscript, HRQOL is defined as the impact of a health condition on a patient's functioning across domains (e.g., school, emotional, social). In pediatric epilepsy, clinical guidelines recommend that treatment goals not only consist of achieving seizure control, but also attaining good HRQOL.2, 3 Patients may experience significant psychosocial comorbidities and family stressors that impact HRQOL, particularly in school, emotional, and social domains.4, 5 These areas of functioning may not necessarily improve with medical treatment alone, even if seizure freedom is achieved. In fact, side effects from antiepileptic drugs (AEDs), the primary treatment for epilepsy, may contribute to HRQOL impairments.6 Development of effective psychosocial interventions to improve HRQOL is essential; however, the first step is to identify modifiable family factors that negatively influence child HRQOL. Research has consistently documented poor HRQOL in children with epilepsy.3, 6-8 More recently, studies have examined biological and psychosocial predictors of HRQOL, including seizures, AED side effects, maternal depressive symptoms, and child psychological functioning.3, 6, 9, 10 This is consistent with current conceptual frameworks describing the complex interactions between biological (i.e., non-modifiable) and psychosocial (i.e., modifiable) predictors of HRQOL in children with epilepsy.11 While previously examined biological and psychosocial variables predict some variability in HRQOL outcomes in pediatric epilepsy, there are several important modifiable parent-related variables that have yet to be studied, including parenting stress, perceived stigma, and parental epilepsy-related worries and concerns.11 These parent-related variables could have immediate and concurrent impacts on HRQOL. Parent factors are particularly important for HRQOL outcomes, especially for younger children.11, 12 While the literature indicates that caregiver adjustment (e.g., parenting stress, depressive symptoms) impacts HRQOL for children with other chronic conditions,13-15 little is known in pediatric epilepsy.9 It is also unknown how general parenting stress and stress specific to epilepsy may differentially impact child HRQOL. In addition, perceived stigma, and fears about epilepsy could impact child HRQOL outcomes given their impact on HRQOL among adult populations.16-18 Understanding the unique role of parenting factors (e.g., general parenting stress and epilepsy-specific stress), perceived stigma, and fears and concerns about epilepsy that contribute to psychosocial aspects of HRQOL above and beyond disease management factors may inform family-based interventions to improve child HRQOL. Researchers use both generic, which allows for cross-disease comparison, and disease-specific HRQOL measures, which are more sensitive and specific, in pediatric epilepsy.19, 20 However, few studies have used both measures even though they provide unique information that is beneficial to understanding patient outcomes.19, 21 In summary, it is essential to identify modifiable, psychosocial factors impacting generic and disease-specific HRQOL over time, which would inform the development and timing of interventions for improving HRQOL outcomes. The current prospective, longitudinal study examined modifiable, parent psychosocial factors (general and epilepsy-related stress) predicting HRQOL at three critical time points post-diagnosis (i.e., 1 month post-diagnosis, following AED titration and initial adjustment to diagnosis and treatment; 13 months post-diagnosis, treatment maintenance; 25 months post-diagnosis, earliest that AED wean could occur), after controlling for demographic characteristics, disease variables, and AED adherence. The primary aim was to identify the cross-sectional and immediate impact of parent factors (i.e., parent fears and concerns, general and epilepsy-specific parenting stress, perceived stigma) on psychosocial domains of children's generic and epilepsy-specific HRQOL. Epilepsy-specific HRQOL across other HRQOL domains were explored in secondary analyses. We hypothesized that increased parent-reported general and epilepsy-specific stress, as well as parental fears/concerns and stigma would predict poorer generic and epilepsy-specific HRQOL above and beyond demographic, disease, and adherence variables at these critical time points.