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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References
Sung L, Petrou S, Ungar WJ. Measurement of health utilities in children. In: Ungar WJ, editor. Economic evaluation in child health. Oxford: Oxford University Press, 2010:77–90
Ungar WJ, Gerber A. The uniqueness of child health and challenges to measuring costs and consequences. In: Ungar WJ, editor. Economic evaluation in child health. Oxford: Oxford University Press, 2010: 3–32
Finkelstein JW. Methods, models and measures of health-related quality of life for children and adolescents. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents. Mahwah (NJ): Lawrence Erlbaum Associates Publishers, 1998: 39–52
Jacobson AM, Fried K. Conceptual issues in developing quality of life assessments for children: illustrations from studies of insulin-dependent diabetes mellitus. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents. Mahwah (NJ): Lawrence Erlbaum Associates Publishers, 1998: 131–50
Rosenbaum PJ, Saigal S. Measuring health-related quality of life in pediatric populations: conceptual issues. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd rev. ed. Philadelphia (PA): Lippincott-Raven Publishers, 1996: 785–91
Annett RD. Assessment of health status and quality of life outcomes for children with asthma. J Allergy Clin Immunol 2001; 107: S473–81
Ratcliffe J, Couzner L, Flynn T, et al. Valuing Child Health Utility 9D health states with a young adolescent sample. Appl Health Econ Health Policy 2011; 9(1): 15–27
Brunner HI, Maker D, Grundland B, et al. Preference-based measurement of health related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKD). Med Decis Making 2003; 23(4): 314–22
Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001; 5(4): 1–156
Saigal S, Rosenbaum PJ, Hoult L, et al. Conceptual and methodological issues in assessing health-related quality of life in children and adolescents: illustrations from studies of extremely low birthweight survivors. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents. Mahwah (NJ): Lawrence Erlbaum Associates Publishers, 1998: 151–69
Sung L, Young NL, Greenberg ML, et al. Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation method. J Clin Epidemiol 2004; 57(11): 1161–6
Belfort MB, Zupancic JAF, Riera KM, et al. Health state preferences associated with weight status in children and adolescents. BMC Pediatr 2011; 11: 12
Fluchel M, Horsman JR, Furlong W, et al. Self and proxyreported health status and health-related quality of life in survivors of childhood cancer in Uruguay. Pediatr Blood Cancer 2008 Apr; 50(4): 838–43
Pal DK. Quality of life assessment in children: a review of conceptual and methodological issues in multidimensional health status measures. J Epidemiol Community Health 1996 Aug; 50(4): 391–6
Petrou S. Methodological issues raised by preference-based approaches to measuring the health status of children. Health Econ 2003; 12(8): 697–702
Simon SB, Howe LW, Kirschenbaum H. Values clarification: a handbook of practical strategies for teachers and students. New York: Hart Publishing, 1972
Ungar WJ, Mirabelli C, Cousins M, et al. A qualitative analysis of a dyad approach to health-related quality of life measurement in children with asthma. Soc Sci Med 2006 Nov; 63(9): 2354–66
Feeny D, Juniper EF, Ferrie PJ, et al. Why not just ask the kids? Health-related quality of life in children with asthma. In: Drotar D, editor. Measuring health-related quality of life in children and adolescents. Mahwah (NJ): Lawrence Erlbaum Associates Publishers, 1998: 171–85
Olson LM, Asmussen L. Current methods in measuring health-related quality of life in children with asthma. In: Weiss KB, Buist AS, Sullivan SD, editors. Asthma’s impact on society, the social and economic burden. New York: Marcel Dekker Inc., 2000: 99–126
Halfon N, Newacheck PW. Characterizing the social impact of asthma in children. In: Weiss KB, Buist AS, Sullivan SD, editors. Asthma’s impact on society, the social and economic burden. New York: Marcel Dekker Inc., 2000: 23–53
Walter SD, Eliasziw M, Donner A. Sample size and optimal designs for reliability studies. Stat Med 1998; 17: 101–10
Feeny D, Torrance GW, Furlong W. Health utilities index. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd rev. ed. Philadelphia (PA): Lippincott-Raven Publishers, 1996: 239–52
Varni JW, Burwinkle TM, Rapoff MA, et al. The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory generic core scales and asthma module. J Behav Med 2004; 27(3): 297–318
Varni JW, Seid M, Kurtin PS. PedsQL™ 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001; 39(8): 800–12
Eiser C, Morse R. The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 2001; 22(4): 248–56
Drummond MF, Sculpher MJ, Torrance GW, et al. Methods for the economic evaluation of health care programmes. 3rd rev. ed. Oxford: Oxford University Press, 2005
Saigal S, Feeny D, Rosenbaum PJ, et al. Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. J Pediatr 1997; 130(3): 495
Glaser AW, Furlong W, Walker DA, et al. Applicability of the Health Utilities Index to a population of childhood survivors of central nervous system tumours in the UK. Eur J Cancer 1999; 35(2): 256–61
Varni JW, Seid M, Smith-Knight T, et al. The PedsQL 4.0 generic core scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med 2002; 25(2): 175–93
Chan KS, Mangione-Smith R, Burwinkle TM, et al. Reliability and validity of the short-form generic core scales and asthma module. Med Care 2005; 43(3): 256–65
Juniper EF, Guyatt GH, Feeny DH, et al. Minimum skills required by children to complete health-related quality of life instruments for asthma: comparison of measurement properties. Eur Resp J 1997; 10: 2285–94
Juniper EF, Guyatt GH, Feeny DH, et al. Measuring quality of life in children with asthma. Qual Life Res 1996; 5: 35–46
Becker A, Berube D, Chad A, et al. Canadian pediatric asthma consensus guidelines, 2003 (updated to December 2004) CMAJ 2005; 173(6): S12–S4
National Asthma Education and Prevention Program Coordinating Committee. Expert panel report 3: guidelines for the diagnosis and management of asthma. Bethesda (MD): National Heart Lung and Blood Institute, National Institute of Health, 2007
Juniper EF, O’Byrne PM, Guyatt GH, et al. Development and validation of a questionnaire to measure asthma control. Eur Resp J 1999; 14: 902–7
Sung L, Greenberg ML, Doyle JJ, et al. Construct validation of the health utilities index and the child health questionnaire in children undergoing cancer chemotherapy. Br J Cancer 2003; 88(8): 1185–90
Guyatt G, Walter S, Norman G. Measuring change over time: assessing the usefulness of evaluative instruments. J Chron Dis 1987; 40(2): 171–8
Garner R, Kohen D. Changes in the prevalence of asthma among Canadian children. Health Rep 2008; 19(2): 45–50
Rietveld S, Prins PJ, Kolk AM. The capacity of children with and without asthma to detect external resistive loads on breathing. J Asthma 1996; 33(4): 221–30
Schlottman A. Children’s judgment of gambles: a disordinal violation of utility. J Behav Decis Making 2000; 13: 77–89
Guyatt GH, Juniper EF, Griffith LE, et al. Children and adult perceptions of childhood asthma. Pediatrics 1997; 99(2): 165–8
Edelbrock C, Costello AJ, Dulcan MK, et al. Parent-child agreement on child psychiatric symptoms assessed via structured interview. J Child Psychol Psychiatry 1986; 27(2): 181–90
Herjanic B, Herjanic M, Brown F, et al. Are children reliable reporters? J Abnorm Child Psychol 1975; 3: 41–8
Herjanic B, Reich W. Development of a structured psychiatric interview for children: agreement between child and parent on individual symptoms. J Abnorm Child Psychol 1997 Feb; 25(1): 21–31
Kashani JH, Orvaschel H, Burk JP, et al. Informant variance: the issue of parent-child disagreement. J Am Acad Child Psychiatry 1985; 24(4): 437–41
Kazdin AE, French NH, Unis AS, et al. Assessment of childhood depression: correspondence of child and parent ratings. J Am Acad Child Psychiatry 1983; 22(2): 157–64
Shiell A, Hawe P, Seymour J. Values and preferences are not necessarily the same. Health Econ 1997; 6(9): 515–8
Saigal S, Rosenbaum PL, Feeny D, et al. Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics 2000; 105(3): 569–74
Verrips GH, Stuifbergen MC, den Ouden AL, et al. Measuring health status using the Health Utilities Index: agreement between raters and between modalities of administration. J Clin Epidemiol 2001; 54(5): 475–81
Prosser LA, Hammitt JK, Keren R. Measuring health preferences for use in cost-utility and cost-benefit analyses of interventions in children: theoretical and methodological considerations. Pharmacoeconomics 2007; 25(9): 713–26
De Civita M, Regier D, Alamgir AH, et al. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 2005; 23(7): 659–85
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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DOI: https://doi.org/10.2165/11597890-000000000-00000