Cardiology in the Young

Original Articles

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

Jo Wraya1a2 c1, Rodney Franklina2, Kate Browna1, Jacqueline Blytha3 and Bradley S. Marinoa4

a1 Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom

a2 Department of Pediatric Cardiology, Royal Brompton and Harefield NHS Foundation Trust, London, United Kingdom

a3 Department of Clinical Psychology, Birmingham Children's Hospital NHS Trust, Birmingham, United Kingdom

a4 Department of Pediatrics, Cincinnati Children's Medical Center, Cincinnati, United States of America

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.

(Received December 02 2010)

(Accepted April 15 2011)

(Online publication June 21 2011)

Correspondence:

c1 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: jo.wray@btopenworld.com