Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy

Nora Fayed; Lisa Avery; Aileen M Davis; David L Streiner; Mark Ferro; Peter Rosenbaum; Charles Cunningham; Lucyna Lach; Michael Boyle; Gabriel M Ronen; QUALITÉ Group

doi:10.1016/j.jval.2019.01.019

Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy

Value Health. 2019 Jul;22(7):822-828. doi: 10.1016/j.jval.2019.01.019. Epub 2019 May 17.

Authors

Affiliations

¹ School of Rehabilitation Therapy, Queen's University, Kingston, ON, Canada. Electronic address: nora.fayed@queensu.ca.
² Avery Information Services, Orillia, ON, Canada.
³ Krembil Research Institute, Toronto Western Hospital, Toronto, ON, Canada.
⁴ Department of Psychiatry and Behavioural Neurosciences, St. Joseph's Healthcare (West 5th Campus), Hamilton, ON, Canada.
⁵ School of Public Health and Health Systems, University of Waterloo, Waterloo, ON, Canada.
⁶ Institute for Applied Health Sciences, McMaster University, Hamilton, ON, Canada.
⁷ Department of Psychiatry and Behavioural Neurosciences, Hamilton Health Sciences (Chedoke Site), Hamilton, ON, Canada.
⁸ School of Social Work, McGill University, Montreal, QC, Canada.
⁹ Offord Centre for Child Studies, McMaster University, Hamilton, ON, Canada.
¹⁰ Department of Pediatrics, McMaster University, Hamilton, ON, Canada.

PMID: 31277830
DOI: 10.1016/j.jval.2019.01.019

Abstract

Objectives: To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date.

Methods: Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITÉ Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents.

Results: Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The "agreement" classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called "growing discrepancy."

Conclusions: Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.

Keywords: child self-report; epilepsy; latent variable model; parent proxy; quality of life.

Publication types

Comparative Study
Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological
Adolescent
Adolescent Behavior*
Age Factors
Child
Child Behavior*
Child, Preschool
Cost of Illness
Epilepsy / diagnosis
Epilepsy / psychology*
Epilepsy / therapy
Female
Humans
Longitudinal Studies
Male
Mental Health
Parents / psychology*
Peer Influence
Proxy / psychology*
Quality of Life*
Reproducibility of Results
Self Report*
Severity of Illness Index
Social Support

Grants and funding

86637/CIHR/Canada