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Assessing the generalisability of the Pediatric Cardiac Quality of Life Inventory in the United Kingdom

Published online by Cambridge University Press:  26 February 2013

Jo Wray ,
Kate Brown ,
Rodney Franklin ,
Amy Cassedy  and
Bradley S. Marino
Jo Wray*
Affiliation:
Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom Royal Brompton and Harefield NHS Foundation Trust, London, United Kingdom
Kate Brown
Affiliation:
Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom
Rodney Franklin
Affiliation:
Royal Brompton and Harefield NHS Foundation Trust, London, United Kingdom
Amy Cassedy
Affiliation:
Cincinnati Children's Hospital Medical Center, Cincinnati, United States of America
Bradley S. Marino
Affiliation:
Cincinnati Children's Hospital Medical Center, Cincinnati, United States of America
*
Correspondence to: Dr J. Wray, Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London WC1N 3JH, United Kingdom. Tel: +020 78298630; Fax: +020 78138440; E-mail: [email protected]
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Abstract

Purpose

To demonstrate the generalisability of the Pediatric Cardiac Quality of Life Inventory in the United Kingdom.

Methods

Children and adolescents with heart disease were recruited from three tertiary paediatric cardiac centres in the United Kingdom and completed the Pediatric Cardiac Quality of Life Inventory. Item response option variability, total and subscale scores, patterns of correlation, and internal consistency were compared between the three sites.

Results

A total of 1537 participants – 768 children/adolescents and 769 parents – were evaluated from the three sites. Patterns of item response option variability were similar and acceptable for all samples – child, adolescent, parent of child, and parent of adolescent. Internal consistency was high (0.82–0.96) for all samples from each site, and item–subscale, subscale–subscale, subscale–total, and item–total correlations were moderate to excellent for each centre. Comparisons of patterns of subscale and total score correlations between the three sites revealed no significant differences.

Conclusion

Scores on the Pediatric Cardiac Quality of Life Inventory are generalisable in the United Kingdom, supporting the use of this measure for multi-centre studies of health-related quality of life of children and adolescents with heart disease.

Keywords

Health-related quality of lifevaliditycongenitalacquired
Type
Original Articles
Information
Cardiology in the Young , Volume 24 , Issue 2 , April 2014 , pp. 220 - 228
Copyright
Copyright © Cambridge University Press 2013 

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References

1. Wray, J, Sensky, T. How does the intervention of cardiac surgery affect the self-perception of children with congenital heart disease? Child Care Health Dev 1998; 24: 57–72.Google Scholar
2. Bellinger, DC. Are children with congenital cardiac malformations at increased risk of deficits in social cognition? Cardiol Young 2008; 18: 3–9.Google Scholar
3. Karsdorp, PA, Everaerd, W, Kindt, M, et al. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol 2007; 32: 527–541.CrossRefGoogle ScholarPubMed
4. Forbess, JM, Visconti, KJ, Hancock-Friesen, C, et al. Neurodevelopmental outcome after congenital heart surgery: results from an institutional registry. Circulation 2002; 106: I95–I102.Google Scholar
5. Snookes, SH, Gunn, JK, Eldridge, BJ, et al. A systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. Pediatrics 2010; 125: e818–e827.CrossRefGoogle ScholarPubMed
6. Limperopoulos, C, Majnemer, A, Shevell, MI, et al. Functional limitations in young children with congenital heart defects after cardiac surgery. Pediatrics 2001; 108: 1325–1331.CrossRefGoogle ScholarPubMed
7. Mahle, WT, McBride, MG, Paridon, SM. Exercise performance after the arterial switch operation for D-transposition of the great arteries. Am J Cardiol 2001; 87: 753–758.CrossRefGoogle ScholarPubMed
8. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (Suppl 1): 92–104.Google Scholar
9. Fitzpatrick, R, Davey, C, Buxton, MJ, et al. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess 1998; 2:i–iv, 1–74.CrossRefGoogle ScholarPubMed
10. Drotar, D. Measuring health-related quality of life in children and adolescents. Erlbaum, Mahwah, NJ, 1998.Google Scholar
11. Naughton, MJ, Shumaker, SA. The case for domains of function in quality of life assessment. Qual Life Res 2003; 12 (Suppl 1): 73–80.Google Scholar
12. Eiser, C, Morse, R. The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 2001; 22: 248–256.Google Scholar
13. Terwee, CB, Bot, SD, de Boer, MR, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007; 60: 34–42.Google Scholar
14. Streiner, DL, Norman, GR. Health measurement scales. Oxford University Press, New York, 1995.Google Scholar
15. Koot, HM, Wallander, JL. Quality of life in child and adolescent illness: concepts, methods and findings. Brunner-Routledge, New York, NY, 2001.Google Scholar
16. Messick, S. Validity of psychological assessment: validation of inferences from persons’ responses and performances as scientific inquiry into score meaning. Am Psychol 1995; 50: 741–749.Google Scholar
17. Marino, BS, Shera, D, Wernovsky, G, et al. The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res 2008; 17: 613–626.Google Scholar
18. Wray, J, Franklin, R, Brown, K, et al. Linguistic validation of a disease-specific quality of life measure for children and teenagers with cardiac disease. Cardiol Young 2011: 1–5.Google ScholarPubMed
19. Marino, BS, Tomlinson, RS, Wernovsky, G, et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics 2010; 126: 498–508.Google Scholar
20. Wray, J, Franklin, R, Brown, K et al. Testing the Pediatric Cardiac Quality of Life Inventory in the United Kingdom. Acta Paediatr 2013; 102: e68–e73.Google Scholar
21. Marino, BS, Drotar, D, Cassedy, A, et al. External validity of the pediatric cardiac quality of life inventory. Qual Life Res 2011; 20: 205–214.Google Scholar
22. National Institute for Cardiovascular Outcomes Research (NICOR). Congenital Heart Disease. https://nicor5.nicor.org.uk/CHD/an_paeds.nsf/WSummaryYears?openview&RestrictToCategory=2010&start=1&count=500 Google Scholar
23. Uzark, K, Jones, K, Burwinkle, TM, et al. The Pediatric Quality of Life Inventory in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–148.Google Scholar
24. Kendall, L, Lewin, RJ, Parsons, JM, et al. Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiologic clinics. Cardiol Young 2001; 11: 431–438.Google Scholar
25. Macran, S, Birks, Y, Parsons, J, et al. The development of a new measure of quality of life for children with congenital cardiac disease. Cardiol Young 2006; 16: 165–172.CrossRefGoogle ScholarPubMed
26. Office for National Statistics. Population estimates by ethnic group 2002–2009. Newport, 2011.Google Scholar