Correlates of health‐related quality of life in children with drug resistant epilepsy

Abstract

SUMMARYObjective: Health-related quality of life (HRQL) is compromised in children with epilepsy. The current study aimed to identify correlates of HRQL in children with drug resistant epilepsy. Methods: Data came from 115 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Individual, clinical, and family factors were evaluated. HRQL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE), a parent-rated epilepsy-specific instrument, with composite scores ranging from 0 to 100. A series of univariable linear regression analyses were conducted to identify significant associations with HRQL, followed by a multivariable regression analysis. Results: Children had a mean age of 11.85 AE 3.81 years and 65 (56.5%) were male. The mean composite QOLCE score was 60.18 AE 16.69. Child age, sex, age at seizure onset, duration of epilepsy, caregiver age, caregiver education, and income were not significantly associated with HRQL. Univariable regression analyses revealed that a higher number of anti-seizure medications (p = 0.020), lower IQ (p = 0.002), greater seizure frequency (p = 0.048), caregiver unemployment (p = 0.010), higher caregiver depressive and anxiety symptoms (p < 0.001 for both), poorer family adaptation, fewer family resources, and a greater number of family demands (p < 0.001 for all) were associated with lower HRQL. Multivariable regression analysis showed that lower child IQ (b = 0.20, p = 0.004), fewer family resources (b = 0.43, p = 0.012), and caregiver unemployment (b = 6.53, p = 0.018) were associated with diminished HRQL in children. Significance: The results emphasize the importance of child cognition and family variables in the HRQL of children with drug-resistant epilepsy. The findings speak to the importance of offering comprehensive care to children and their families to address the nonmedical features that impact on HRQL. KEY WORDS: Pediatric epilepsy, Health-related quality of life, Family.Epilepsy in children can often have catastrophic consequences on multiple domains of health-related quality of life (HRQL). HRQL is defined by the World Health Organization (WHO) as a broad, multidimensional construct including not only the disease state but also the person's physical, psychological, and social well-being. This term refers to the impact, both subjective and objective, of dysfunction associated with illness or injury, and treatment. FULL-LENGTH ORIGINAL RESEARCHsubstantial body of literature suggests that HRQL is impaired in children with epilepsy, 2 who have higher rates of behavioral, cognitive, emotional, social, and academic problems compared to healthy children or children with other chronic health conditions. [3][4][5][6][7][8][9][10] In light of these findings, a predominant objective of the management of pediatric epilepsy is to both improve and prevent potential declines in patient HRQL.11 Correspondingly, a comprehensive understanding of the factors that...

Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy

“…Caregiver anxiety and caregiver satisfaction with family relationships contributed most strongly to child QOL over time. This finding is consistent with previous research highlighting the dominant effects of psychosocial factors, such as parental psychopathology and the family environment more broadly, on child QOL at baseline and longitudinally, relative to clinical factors. One exception is AED side effects, a seizure‐related variable that was not captured in the current study but that has been identified as a consistent predictor of QOL in children with epilepsy …”

“…Data were collected as part of the Impact of Pediatric Epilepsy Surgery on Health‐Related Quality of Life Study (PEPSQOL), a multicenter longitudinal prospective cohort study . Participants were recruited between April 2014 and September 2016 while being evaluated for epilepsy surgery at eight centers across Canada.…”

“…Ordered logistic regression was employed to examine the association between the G‐QOLCE scores and identified correlates of QOL in children with epilepsy at both time points. Potential correlates included seizure frequency, IQ, number of AEDs, duration of epilepsy, caregiver anxiety, caregiver depression, family functioning, family resources, family demands (measured at baseline only), and household income.…”

“…We assessed the validity, reliability, and responsiveness of the G‐QOLCE using a multicenter sample of children with drug‐resistant epilepsy. As a secondary aim, we examined potential clinical and psychosocial correlates (identified in prior studies) of G‐QOLCE scores at baseline and 6‐month follow‐up. The use of a more clinically severe, drug‐resistant sample for initial psychometric evaluation of the G‐QOLCE is supported by previous work examining the benefits of patient‐reported health status measurement in clinical practice .…”

The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research

“…Research supporting the importance of knowledge in this area comes from studies demonstrating that caregiver burden is significantly associated with the child with epilepsy's quality of life [21,24,32]. For example, in one study, the level of a mother's caregiver stress was found to be moderately to strongly associated with behavior problems in the child [21].…”