Measuring disease-specific quality of life in rare populations: a practical approach to cross-cultural translation

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• 作者：Victoria E Price (1)
  Robert J Klaassen (2)
  Paula HB Bolton-Maggs (3)
  John D Grainger (4)
  Christine Curtis (5)
  Cindy Wakefield (6)
  Gustavo Dufort (7)
  Arne Riedlinger (8)
  Christophe Soltner (9)
  Victor S Blanchette (5) (6)
  Nancy L Young (10) (5)
  
• 刊名：Health and Quality of Life Outcomes
• 出版年：2009
• 出版时间：December 2009
• 年：2009
• 卷：7
• 期：1
• 全文大小：603KB
• 参考文献：1. Guillemin F, Bombardier C, Beaton D:ass="a-plus-plus">Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. / J Clin Epidemiol 1993,ass="a-plus-plus">46(12)ass="a-plus-plus">:1417鈥?432. <a class="external" href="http://dx.doi.org/10.1016/0895-4356(93)90142-N">CrossRefa>
  2. Beaton DE, Bombardier C, Guillemin F, Ferraz MB:ass="a-plus-plus">Guidelines for the process of cross-cultural adaptation of self-report measures. / Spine 2000,ass="a-plus-plus">25(24)ass="a-plus-plus">:3186鈥?191. <a class="external" href="http://dx.doi.org/10.1097/00007632-200012150-00014">CrossRefa>
  3. Bullinger M, Alonso J, Apolone G, Leplege A, Sullivan M, Wood-Dauphinee S, Gandek B, Wagner A, Aaronson N, Bech P, / et al.:ass="a-plus-plus">Translating health status questionnaires and evaluating their quality: the IQOLA Project approach. International Quality of Life Assessment. / J Clin Epidemiol 1998,ass="a-plus-plus">51(11)ass="a-plus-plus">:913鈥?23. <a class="external" href="http://dx.doi.org/10.1016/S0895-4356(98)00082-1">CrossRefa>
  4. von Mackensen S, Bullinger M:ass="a-plus-plus">Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL). / Haemophilia 2004,ass="a-plus-plus">10(Suppl 1)ass="a-plus-plus">:17鈥?5. <a class="external" href="http://dx.doi.org/10.1111/j.1355-0691.2004.00875.x">CrossRefa>
  5. Klaassen RJ, Blanchette VS, Barnard D, Wakefield CD, Curtis C, Bradley CS, Neufeld EJ, Buchanan GR, Silva MP, Chan AK, / et al.:ass="a-plus-plus">Validity, reliability, and responsiveness of a new measure of health-related quality of life in children with immune thrombocytopenic purpura: the Kids' ITP Tools. / J Pediatr 2007,ass="a-plus-plus">150(5)ass="a-plus-plus">:510鈥?15. 515, e511 <a class="external" href="http://dx.doi.org/10.1016/j.jpeds.2007.01.037">CrossRefa>
  6. Jobe JB:ass="a-plus-plus">Cognitive psychology and self-reports: models and methods. / Qual Life Res 2003,ass="a-plus-plus">12(3)ass="a-plus-plus">:219鈥?27. <a class="external" href="http://dx.doi.org/10.1023/A:1023279029852">CrossRefa>
  7. Perneger TV, Leplege A, Etter JF:ass="a-plus-plus">Cross-cultural adaptation of a psychometric instrument: two methods compared. / J Clin Epidemiol 1999,ass="a-plus-plus">52(11)ass="a-plus-plus">:1037鈥?046. <a class="external" href="http://dx.doi.org/10.1016/S0895-4356(99)00088-8">CrossRefa>
  
• 作者单位：Victoria E Price (1)
  Robert J Klaassen (2)
  Paula HB Bolton-Maggs (3)
  John D Grainger (4)
  Christine Curtis (5)
  Cindy Wakefield (6)
  Gustavo Dufort (7)
  Arne Riedlinger (8)
  Christophe Soltner (9)
  Victor S Blanchette (5) (6)
  Nancy L Young (10) (5)
  
  1. Division of Pediatric Hematology/Oncology, IWK Health Centre, Dalhousie University, Halifax, NS, Canada
  2. Division of Pediatric Hematology/Oncology, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada
  3. Department of Clinical Hematology, Manchester Royal Infirmary, Manchester, UK
  4. Royal Manchester Children's Hospital, Manchester, UK
  5. Child Health Evaluative Science, The SickKids Research Institute, Toronto, ON, Canada
  6. Division of Pediatric Hematology/Oncology, The Hospital for Sick Children, Toronto, ON, Canada
  7. Pediatric Hemato-Oncology, Centro Hospitalario Pereira Rossell, Montevideo, Uruguay
  8. Department of Pediatrics, Charit茅, Universit盲tsmedizin, Berlin, Germany
  9. Anesthesiology and Surgical Intensive Care Department, University Hospital of Angers, Angers, France
  10. School of Rural and Northern Health, Laurentian University, Sudbury, ON, Canada
  

文摘

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 objective of this manuscript is to describe the process that was developed to achieve accurate cross-cultural translations of a disease-specific QoL measure, to overcome the challenges of a small sample size, i.e. children with a rare disorder. Procedure A measurement study was conducted in the United Kingdom (UK), France, Germany and Uruguay, during which the validated measure was translated into the languages of the respective countries. Results This is a report of a modified, child-centric, cross-cultural translation and adaptation process in which culturally appropriate and methodologically valid translations of a disease-specific QoL measure, the Kids' ITP Tools (KIT), were performed in children with immune thrombocytopenic purpura (ITP). The KIT was translated from North American English into UK English, French, German, and Spanish. Conclusion This study was a successful international collaboration. The modified process through which culturally appropriate and methodologically valid translations of QoL measures may be achieved in a pediatric population with a relatively rare disorder is reported.