Quality of life in childhood epilepsy: What is the level of agreement between youth and their parents?

Abstract

Children and parents evaluate the child’s quality of life (QOL) from their own perspectives; therefore, responses may differ, especially in abstract domains. We examined differences between self- and proxy-reported QOL of children with epilepsy. Children with active epilepsy (N = 375) and their parents (N = 378) separately completed the CHEQOL-25, a condition-specific QOL measure. The intraclass correlation coefficient was used to determine interrater agreement. Concordance on the Total CHEQOL-25 was 0.45 (P < 0.01). Discrepancies were greatest for the subscales of Secrecy (0.24, P < 0.01) and Present Concerns (0.32, P < 0.01). School placement correlated with discrepancy in the Intrapersonal/Emotional subscale (r = 0.19, P < 0.05), and the child’s age at testing correlated with discrepancy of the Total measure (r = 0.15, P < 0.01). This study demonstrates that parent perspectives alone are insufficient to measure their child’s QOL. The CHEQOL-25 is a practical tool, with complementary parent and child versions, which can be used to determine health-related quality of life in children with epilepsy.

Introduction

The concept of health outcome recognizes that the goal of health care is to help people feel and function better, as well as adapt to the social and psychological impacts and values of their impairments. The recent introduction of the WHO International Classification of Functioning, Health and Disability (ICF) framework importantly expands the focus on health to include environmental and personal factors, and to identify “activity” and “participation” as goals worthy of attention [1]. Furthermore, there is growing interest in understanding and enhancing the “life quality” of individuals with chronic medical conditions for which cure is not currently a realistic goal.

There is a significant misconception about what constitutes “quality of life” (QOL) and “health-related quality of life” (HRQOL) [2]. A generally accepted definition of QOL is the “individual’s perceptions of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations and concerns” [3]. In a nutshell, it entails “an overall assessment of wellbeing across various domains” [4]. HRQOL is considered to be either a subdomain of the more global construct of QOL, which includes health-related domains of life [5], or a closely related but independent construct [6].

“Health outcome” refers to both objective indicators of functional status, activity, and participation [7] and subjective indicators of HRQOL. For children with a chronic health condition, quality of life should incorporate the child’s own perception of how his or her internal and external life and well-being are affected by the condition and its treatment. As such, self-reported evaluation of QOL is essential. However, children with limited cognitive or communication abilities may not be able to articulate their experiences, difficulties, and concerns about living with a chronic condition [8]. In these circumstances, parents may act as surrogate informants of their child’s HRQOL. Parents’ assessments of their child should correlate closely with self-reports when rating their child’s performance on concrete, observable functioning, such as motor ability; the correlations would be expected to be lower on functional emotional measures (i.e., anxiety or depression) and lowest on their perceptions of abstract issues, such as their child’s internal life [8], [9], [10], [11]. The reason is that, when children and parents evaluate the child’s HRQOL, they may draw on different values and factors that could result in discordance between raters [12], [13]. For example, we know that parents of children with epilepsy are not aware of the child’s quest for normality; and, in contrast to their parents, children are not concerned about the future [14], [15]. Thus, a combination of child self- and parent proxy-reported HRQOL may provide more complete information about how the child is affected by the condition or its treatment than either alone [16].

The objective of this study was to gain a better understanding of how children and their parents differentially report various issues of the child’s HRQOL when responding to a measure that captures the experiential aspects of childhood epilepsy from the youths’ and parents’ perspectives [14] and where the conceptual components of HRQOL are closely aligned with what youth draw on to generate a representation of their HRQOL [17]. We hypothesized that concrete external domains of HRQOL, such as interpersonal–social consequences of epilepsy, correlate more highly between the child and their parent than less visible abstract domains, such as keeping epilepsy a secret. In addition, we suggest that age at epilepsy onset, gender, epilepsy duration, and seizure severity are not associated with interrater discrepancy. However, the age of the child at testing and whether or not the child receives special help in school [18] are associated with discordance between parent- and child-reported HRQOL. This is expected, in part, because of the age-dependent level of communication between children and their parents and a potentially lower level of communication between children with cognitive or behavioral problems and their parents.