TY - JOUR
T1 - Measuring disease-specific quality of life in rare populations
T2 - A practical approach to cross-cultural translation
AU - Price, Victoria E.
AU - Klaassen, Robert J.
AU - Bolton-Maggs, Paula H.B.
AU - Grainger, John D.
AU - Curtis, Christine
AU - Wakefield, Cindy
AU - Dufort, Gustavo
AU - Riedlinger, Arne
AU - Soltner, Christophe
AU - Blanchette, Victor S.
AU - Young, Nancy L.
N1 - Funding Information:
Dr. Young is supported by a Canada Research Chair from the Canadian Institutes of Health Research.
Funding Information:
This research was conducted with the support of unrestricted grants from Cangene Corporation and the UK ITP Support Association.
PY - 2009/10/23
Y1 - 2009/10/23
N2 - 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.
AB - 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.
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U2 - 10.1186/1477-7525-7-92
DO - 10.1186/1477-7525-7-92
M3 - Article
C2 - 19852803
AN - SCOPUS:71149086715
SN - 1477-7525
VL - 7
JO - Health and Quality of Life Outcomes
JF - Health and Quality of Life Outcomes
M1 - 92
ER -