Children's perspective of quality of life in epilepsy

被引:85
作者
Fayed, Nora [1 ,2 ,4 ]
Davis, Aileen M. [1 ,6 ,7 ]
Streiner, David L. [3 ,8 ]
Rosenbaum, Peter L. [2 ,4 ]
Cunningham, Charles E. [3 ,5 ]
Lach, Lucyna M. [9 ]
Boyle, Michael H. [3 ,5 ]
Ronen, Gabriel M. [2 ,4 ]
机构
[1] Univ Hlth Network, Hlth Care & Outcomes Res, Toronto, ON, Canada
[2] McMaster Univ, Dept Pediat, Hamilton, ON, Canada
[3] McMaster Univ, Dept Psychiat & Behav Neurosci, Hamilton, ON, Canada
[4] McMaster Univ, CanChild Ctr Childhood Disabil Res, Hamilton, ON, Canada
[5] McMaster Univ, Offord Ctr Child Studies, Hamilton, ON, Canada
[6] Univ Toronto, Inst Hlth Policy Management & Evaluat, Toronto, ON M5S 1A1, Canada
[7] Univ Toronto, Grad Dept Rehabil Sci, Toronto, ON M5S 1A1, Canada
[8] Univ Toronto, Dept Psychiat, Toronto, ON M5S 1A1, Canada
[9] McGill Univ, Sch Social Work, Montreal, PQ, Canada
基金
加拿大健康研究院;
关键词
HEALTH-ORGANIZATION DEFINITIONS; PEDIATRIC EPILEPSY; CHILDHOOD EPILEPSY; SELF-REPORT; PARENTS; YOUTH; SATISFACTION; ADOLESCENTS; RELIABILITY; OUTCOMES;
D O I
10.1212/WNL.0000000000001536
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Objective:To study child mental health, parental support, and social support of children with epilepsy as these relate to quality of life (QOL) using child self-report, seizure-related variables, and estimated verbal intelligence based on receptive vocabulary.Methods:A cross-sectional structural equation model of baseline data from the QUALITE cohort study, which includes 6 Canadian child epilepsy ambulatory programs. A sample of 3,481 children were screened for the following eligibility: 8 to 14 years of age, with active or medication-managed epilepsy. Of 894 eligible children, 506 agreed to participate, of whom 26 were then excluded because of an inability to self-report based on a standard cutoff score of receptive vocabulary lower than 70. The primary outcome of child-reported QOL was measured using the Child Epilepsy QOL Questionnaire.Results:From the child's perspective, epilepsy-specific QOL is strongly related to their mental health and social support but not to their seizures. Specifically, child mental health and peer support exhibit direct associations with QOL; parental support has both direct and indirect associations with QOL (via child mental health); estimated verbal intelligence exerts its strongest association with QOL through mental health; and seizure status exhibits a weak relationship to QOL only through mental health.Conclusions:Among children with epilepsy aged 8 to 14 years, mental health and social support should be areas of focus in the assessment of QOL. Controlling seizures is insufficient care for influencing the child's perception of their life.
引用
收藏
页码:1830 / 1837
页数:8
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