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Parent‐proxy report of their children's health‐related quality of life: an analysis of 13 878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales
Author(s) -
Reading Richard
Publication year - 2007
Publication title -
child: care, health and development
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.832
H-Index - 82
eISSN - 1365-2214
pISSN - 0305-1862
DOI - 10.1111/j.1365-2214.2007.00778_4.x
Subject(s) - proxy (statistics) , medicine , specialty , quality of life (healthcare) , health care , family medicine , gerontology , clinical psychology , nursing , machine learning , computer science , economics , economic growth
Parent‐proxy report of their children's health‐related quality of life: an analysis of 13 878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales.
Varni J. W. , Limbers C. A. & Burwinkle T. M.(2007)Health and Quality of Life Outcomes,5,2.
DOI:10.1186/1477‐7525‐5‐2.Background Health‐related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. While paediatric patient self‐report should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete an HRQOL instrument, and reliable and valid parent‐proxy report instruments are needed in such cases. Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization. Data from the PedsQL Database SM were utilized to test the reliability and validity of parent‐proxy report at the individual age subgroup level for ages 2–16 years as recommended by recent Food and Drug Administration (FDA) guidelines. Methods The sample analysed represents parent‐proxy report age data on 13 878 children ages 2–16 years from the PedsQL 4.0 Generic Core Scales Database SM . Parents were recruited from general paediatric clinics, sub‐specialty clinics and hospitals in which their children were being seen for well‐child checks, mild acute illness or chronic illness care ( n = 3,718, 26.8%), and from a State Children's Health Insurance Program in California ( n = 10 160, 73.2%). Results The percentage of missing item responses for the parent‐proxy report sample as a whole was 2.1%, supporting feasibility. The majority of the parent‐proxy report scales across the age subgroups exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the total scale scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analysing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL scale and summary score, across age subgroups, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium‐to‐large effect size range. Conclusion The results demonstrate the feasibility, reliability and validity of parent‐proxy report at the individual age subgroup for ages 2–16 years. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which reliable and valid responses across age categories are achievable. Even as paediatric patient self‐report is advocated, there remains a fundamental role for parent‐proxy report in paediatric clinical trials and health services research.