Volume 60, Issue 1 pp. 95-100
Research Article

Quality of life in childhood immune thrombocytopenia: International validation of the kids' ITP tools

Robert J. Klaassen MD

Corresponding Author

Robert J. Klaassen MD

Children's Hospital of Eastern Ontario, Ottawa, Canada

Division of Hematology/Oncology, Department of Pediatrics, Children's Hospital of Eastern Ontario, 401 Smyth, Ottawa, Ontario, Canada K1H 8L1.===Search for more papers by this author
Victor Blanchette MD

Victor Blanchette MD

Hospital for Sick Children, University of Toronto, Toronto, Canada

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Tricia A. Burke BA

Tricia A. Burke BA

Laurentian University, Sudbury, Canada

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Cindy Wakefield RN

Cindy Wakefield RN

Hospital for Sick Children, University of Toronto, Toronto, Canada

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John D. Grainger MD

John D. Grainger MD

Royal Manchester Children's Hospital, Manchester, UK

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Gerhard Gaedicke MD

Gerhard Gaedicke MD

Charité University Medicine Berlin, Campus Virchow-Klinikum, Berlin, Germany

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Arne Riedlinger MD

Arne Riedlinger MD

Charité University Medicine Berlin, Campus Virchow-Klinikum, Berlin, Germany

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Gustavo Dufort MD

Gustavo Dufort MD

Hospital Pereira Rossell, Montevideo, Uruguay

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Estela Citrin MD

Estela Citrin MD

Laboratorios Clausen, Montevideo, Uruguay

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Yves Reguerre MD

Yves Reguerre MD

Centre Hospitalier Universitaire d'Angers, Angers, France

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Isabelle Pellier MD

Isabelle Pellier MD

Centre Hospitalier Universitaire d'Angers, Angers, France

Centre de Recherche en Cancérologie, Nantes-Angers, France

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Christine Curtis Msc

Christine Curtis Msc

Hospital for Sick Children, University of Toronto, Toronto, Canada

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Nancy L. Young PhD

Nancy L. Young PhD

Laurentian University, Sudbury, Canada

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First published: 27 July 2012
Citations: 30

Conflict of interest: Nothing to declare.

Disclosure Statement: The KIT was developed with an unrestricted grant from Cangene Corporation.

Abstract

Background

The Kids ITP Tools (KIT) is a disease-specific measure of health-related quality of life for children with immune thrombocytopenia (ITP). To facilitate use in international trials it has been cross-culturally adapted for France, Germany, the United Kingdom and Uruguay. This study assessed the validity and reliability of the translated KIT in comparison to generic quality of life measures.

Methods

Children 2–18 years of age with ITP and their parents were recruited in France, Germany, the United Kingdom and Uruguay. Participants completed the KIT, PedsQL and KINDL. We examined the Pearson's correlation between these measures for our pooled sample and estimated the reliability over a 2-week time period. Findings were further explored by country.

Results

A total of 127 families (81 children self-reported) participated. Mean child-reported scores were: KIT 74.3 (SD = 15.3), PedsQL 81.3 (SD = 13.0), and KINDL 70.5 (SD = 14.3). Corresponding mean parent proxy-reported scores were: 70.6 (SD = 18.1), 75.7 (SD = 16.8) and 72.3 (SD = 12.7), respectively. Correlation between KIT and the generic measures was consistent with our a priori hypothesis (PedsQL r = 0.54, KINDL r = 0.48, both P < 0.0001). Child KIT scores for newly diagnosed ITP patients were significantly lower than for chronic ITP patients (67.3 vs. 77.3; P = 0.005). There was a significant correlation (P < 0.001) between the child and parent proxy KIT scores (ICC = 0.52). Child KIT test-retest reliability was acceptable at 0.71.

Conclusions

The cross-culturally translated KIT is valid and reliable with acceptable correlation to the PedsQL and KINDL. There is a significant difference in child self-reported KIT scores between newly diagnosed and chronic ITP. Pediatr Blood Cancer 2013; 60: 95–100. © 2012 Wiley Periodicals, Inc.

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