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A Parent-Child Dyad Approach to the Assessment of Health Status and Health-Related Quality of Life in Children with Asthma

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Abstract

Background

Assessment of health state and health-related quality of life (HR-QOL) are limited by a child’s age and cognitive ability. Parent-proxy reports are known to differ from children’s reports. Simultaneous assessment using a parent-child dyad is an alternative approach.

Objective

Our objective was to assess the validity, reliability and responsiveness of a parent-child dyad approach to utility and HR-QOL assessment of paediatric asthma health states.

Methods

The setting was specialist care in a hospital-based asthma clinic. Participants were 91 girls and boys with asthma aged 8 to 17 years and 91 parents. The intervention employed was parent-child dyad administration of the Health Utilities Index (HUI) 2 and 3, the Pediatric Quality of Life Inventory™ (PedsQL™) Core and Asthma modules, and the Pediatric Asthma Quality of Life Questionnaire (PAQLQ).

Questionnaires were administered by interview to children and parents separately and then together as a dyad to assess the child’s health state. The dyad interview was repeated at the next clinic visit. Dyad-child agreement was measured by intra-class correlation (ICC) coefficient; Spearman correlations were used to assess convergent validity. Test-retest reliability was assessed in 28 children who remained clinically stable between visits with a two-way ICC coefficient. Responsiveness to change from baseline was assessed with Spearman coefficients in 30 children who demonstrated clinical change between visits.

Results

There was no significant agreement between parent and child for the HUI2 or HUI3 whereas agreement between dyad and child was 0.55 (95% confidence interval [CI] 0.36, 0.69) for the HUI2 and 0.74 (95% CI 0.61, 0.82) for the HUI3 overall. With respect to dyad performance characteristics, both HUI2 and HUI3 overall scores demonstrated moderate convergent validity with the generic PedsQL™ Core domains (range r=0.30–0.52;p<0.01). Dyad HUI2 attributes demonstrated moderate convergent validity with the generic PedsQL™ Core domains of similar constructs (range r=0.35–0.43;p<0.001) and weaker convergent validity with disease-specific domains (range r=0.13–0.32). Dyad HUI3 attributes demonstrated weaker convergent validity compared with the HUI2. For the assessment of test-retest reliability, significant agreement between baseline and follow-up was observed for dyad HUI2 total (r=0.53), dyad PedsQL™ Core summary (r=0.70) and select dyad disease-specific domains. Significant responsiveness (r>0.4; p<0.05) was observed for dyad HUI2 total score change over time as correlated with dyad HUI3, dyad PedsQL™ Core summary and select disease-specific domains.

Conclusions

The parent-child dyad approach demonstrated moderate to strong performance characteristics in generic and disease-specific questionnaires suggesting it may be a valuable alternative to relying on parent proxies for assessing children’s utility and HR-QOL. Future research in additional paediatric populations, younger children and a population-based sample would be useful.

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Acknowledgements

This research was funded by an operating grant from the Canadian Institutes of Health Research (grant no. 66654) and by in-kind support from The Hospital for Sick Children Research Institute. Dr Marshall was supported by a Canada Research Chair in Health Services and Systems Research. Dr Wright was supported by the R.B. Salter Chair in Paediatric Surgical Research.

Dr Ungar was a paid consultant in 2010 to United Biosource Corporation on the topic of measuring utility and HR-QOL in children. Dr Dell reports the receipt of honoraria or speaker fees from Novartis, Graceway Pharmaceuticals, Nycomed, GlaxoSmithKline and Merck Frosst, all manufacturers of asthma medications. All remaining authors have no conflicts to declare.

The valuable assistance of Ms Susan Carpenter, Ms Jennifer Leaist and Ms Bonnie Fleming-Carroll in the recruitment of asthma clinic patients and the conduct of this research is gratefully acknowledged by the authors. The authors thank Dr Peter Bikangaga, Dr Charlotte Miller and Dr Padmaja Subbarao for their support of this research project and their clinical collaboration. They thank the research coordinators for their diligence in interviewing and data collection and the respiratory technologists for coordination of pulmonary function testing for research subjects. They also are indebted to Mr Eshetu Atenafu for his statistical expertise. The authors thank the journal reviewers for valuable comments.

Dr Ungar conceived and designed the study; planned the work; supervised data acquisition; conceived the data analysis plan; supervised data analysis and interpretation of the data; drafted the initial manuscript; performed critical revisions; and approved the final manuscript. Dr Boydell, Dr Feldman, Dr Marshall, Dr Willan and Dr Wright each made a substantial contribution to conception and planning of the work; analysis and interpretation of the data; and critical revision of the manuscript, and approved the final submitted version of the manuscript. Dr Dell made a substantial contribution to conception and planning of the work; acquisition, analysis and interpretation of the data; and critical revision of the manuscript, and approved the final submitted version of the manuscript. Dr Dell is the guarantor for the overall content of this article.

This paper is part of a theme issue co-edited by Lisa Prosser, University of Michigan, USA, and no external funding was used to support the publication of this theme issue.

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Ungar, W.J., Boydell, K., Dell, S. et al. A Parent-Child Dyad Approach to the Assessment of Health Status and Health-Related Quality of Life in Children with Asthma. PharmacoEconomics 30, 697–712 (2012). https://doi.org/10.2165/11597890-000000000-00000

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