Measuring disease-specific quality of life in rare populations: a practical approach to cross-cultural translation
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Measuring disease-specific quality of life in rare populations: a practical approach to cross-cultural translation Victoria E Price1, Robert J Klaassen2, Paula HB Bolton-Maggs3, John D Grainger4, Christine Curtis5, Cindy Wakefield6, Gustavo Dufort7, Arne Riedlinger8, Christophe Soltner9, Victor S Blanchette5,6 and Nancy L Young*5,10 Address: 1Division of Pediatric Hematology/Oncology, IWK Health Centre, Dalhousie University, Halifax, NS, Canada, 2Division of Pediatric Hematology/Oncology, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada, 3Department of Clinical Hematology, Manchester Royal Infirmary, Manchester, UK, 4Royal Manchester Children's Hospital, Manchester, UK, 5Child Health Evaluative Science, The SickKids Research Institute, Toronto, ON, Canada, 6Division of Pediatric Hematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada, 7Pediatric Hemato-Oncology, Centro Hospitalario Pereira Rossell, Montevideo, Uruguay, 8Department of Pediatrics, Charité - Universitätsmedizin, Berlin, Germany, 9Anesthesiology and Surgical Intensive Care Department, University Hospital of Angers, Angers, France and 10School of Rural and Northern Health, Laurentian University, Sudbury, ON, Canada Email: Victoria E Price - [email protected]; Robert J Klaassen - [email protected]; Paula HB Bolton-Maggs - [email protected]; John D Grainger - [email protected]; Christine Curtis - [email protected]; Cindy Wakefield - [email protected]; Gustavo Dufort - [email protected]; Arne Riedlinger - [email protected]; Christophe Soltner - [email protected]; Victor S Blanchette - [email protected]; Nancy L Young* - [email protected] * Corresponding author
Published: 23 October 2009 Health and Quality of Life Outcomes 2009, 7:92
doi:10.1186/1477-7525-7-92
Received: 10 August 2009 Accepted: 23 October 2009
This article is available from: http://www.hqlo.com/content/7/1/92 © 2009 Price et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract Background: Disease-specific quality of life (QoL) measures have enhanced the capacity of outcome measures to evaluate subtle changes and differences between groups. However, when the specific disease is rare, the cohort of patients is small and international collaboration is often necessary to accomplish meaningful research. As many of the QoL measures have been developed in North American English, they require translation to ensure their usefulness in a multi-cultural and/or international society. Published guidelines provide formal methods to achieve cross-culturally comparable versions of a QoL tool. However, these guidelines describe a rigorous process that is not always feasible, particularly in rare disease groups. The obj
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