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Linguistic validation of a disease-specific quality of life measure for children and teenagers with cardiac disease

Published online by Cambridge University Press:  21 June 2011

Jo Wray ,
Rodney Franklin ,
Kate Brown ,
Jacqueline Blyth  and
Bradley S. Marino
Jo Wray*
Affiliation:
Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom Department of Pediatric Cardiology, Royal Brompton and Harefield NHS Foundation Trust, London, United Kingdom
Rodney Franklin
Affiliation:
Department of Pediatric Cardiology, Royal Brompton and Harefield NHS Foundation Trust, London, United Kingdom
Kate Brown
Affiliation:
Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom
Jacqueline Blyth
Affiliation:
Department of Clinical Psychology, Birmingham Children's Hospital NHS Trust, Birmingham, United Kingdom
Bradley S. Marino
Affiliation:
Department of Pediatrics, Cincinnati Children's Medical Center, Cincinnati, United States of America
*
Correspondence to: Dr J. Wray, Cardiothoracic Transplant Office, Level 6, Main Nurses’ Home, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, United Kingdom. Tel: 020 78298630, Fax: 020 78138440; E-mail: [email protected]
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Abstract

Introduction

To anglicise an American – that is, English language – disease-specific health-related quality of life measure, using the Paediatric Cardiac Quality of Life Inventory, for children in the age group of 8–12 years and adolescents in the age group of 13–18 years with cardiac disease, and to assess conceptual equivalence of the American and British versions.

Methods

A process of forward and backward translation of the measure was undertaken before focus groups and individual interviews with 40 participants – that is, 20 children/adolescents with cardiac disease and 20 parents of children/adolescents with cardiac disease – to determine their understanding of the meaning of the questions.

Results

Interviews established that participants understood the meaning of the questions, although some found it difficult to explain the meaning of questions in which the language was explicit and wanted instead to answer the individual questions as they applied to them/their child. There was agreement that all versions of the questionnaire were relevant and comprehensive, and that the length of the questionnaires was acceptable and practical.

Conclusions

The anglicised version of the Paediatric Cardiac Quality of Life Inventory appears to be a linguistically valid measure of health-related quality of life for children and adolescents with cardiac disease. The psychometric properties of the anglicised Paediatric Cardiac Quality of Life Inventory are now being tested in a multi-centre study in the United Kingdom.

Keywords

Health-related quality of lifelinguistic validation
Type
Original Articles
Information
Cardiology in the Young , Volume 22 , Issue 1 , February 2012 , pp. 13 - 17
Copyright
Copyright © Cambridge University Press 2011

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References

1. British Cardiac Society. Grown-up congenital heart (GUCH) disease: current needs and provision of service for adolescents and adults with congenital heart disease in the UK. Heart 2002; 88 (Suppl 1): i1–i14.Google Scholar
2. Bellinger, DC, Wypij, D, duPlessis, AJ, et al. Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial. J Thorac Cardiovasc Surg 2003; 126: 1385–1396.CrossRefGoogle ScholarPubMed
3. Mahle, WT, Clancy, RR, Moss, EM, Gerdes, M, Jobes, DR, Wernovsky, G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics 2000; 105: 1082–1089.CrossRefGoogle ScholarPubMed
4. Department of Health. High quality care for all: NHS next stage review final report. London, 2008.Google Scholar
5. Department of Health. Equity and excellence – liberating the NHS. London, 2010.Google Scholar
6. Department of Health. Guidance on the routine collection of Patient Reported Outcome Measures (PROMs). London, 2008.Google Scholar
7. 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
8. Marino, BS, Tomlinson, RS, Wernovsky, G, et al. Validation of the pediatric cardiac quality of life inventory. Pediatrics 2010; 126: 498–508.Google Scholar
9. Anderson, RT, Aaronson, NK, Leplege, AP, Wilkin, D. International use and application of generic health-related quality of life instruments. In: Spilker B (ed). Quality of Life and Pharmaeconomics in Clinical Trials, 2nd edn. Lippincott-Raven, Philadelphia, 1996; 613–633.Google Scholar
10. Quittner, AL, Sweeny, S, Watrous, M, et al. Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosis. J Pediatr Psychol 2000; 25: 403–414.Google Scholar
11. Behling, O, Law, K. Translating questionnaires and other research instruments: problems and solutions. Sage, Thousand Oaks, CA, 2000.Google Scholar
12. Hutchings, HA, Upton, P, Cheung, WY, et al. Adaptation of the Manchester–Minneapolis Quality of Life instrument for use in the UK population. Arch Dis Child 2007; 92: 855–860.Google Scholar