Abstract
Study design:
Survey of expert opinion, feedback, and development of final consensus.
Objective:
Present the background, purpose, development process and results for the International Spinal Cord Injury (SCI) Quality of Life (QoL) Basic Data Set.
Setting:
International.
Methods:
A committee of experts was established to select and define data elements to be included in an International SCI QoL Basic Data Set. A draft data set was developed and disseminated to appropriate organizations for comment. All suggested revisions were considered, and a final version of the QoL data set was completed.
Results:
The QoL data set consists of 3 variables: ratings of satisfaction with general quality of life, satisfaction with physical health, and satisfaction with psychological health. All variables are rated on a scale ranging from 0 (completely dissatisfied) to 10 (completely satisfied).
Conclusion:
Collection of the International SCI QoL Basic Data Set variables should be a part of all future studies of SCI QoL to facilitate comparison of results across published studies from around the world. Additional standardized instruments to assess other aspects of QoL can be administered based on the purpose of a particular study.
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Acknowledgements
Coloplast A/S, Denmark, supported the work on this data set with an unconditional grant. We are thankful for comments and suggestions received from Michael DeVivo, Jenny Moses and Eric Weerts. The names of the organizations and societies, which endorse the International SCI QoL Basic Data Set will be posted on the ISCoS website (www.iscos.org.uk).
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Charlifue, S., Post, M., Biering-Sørensen, F. et al. International Spinal Cord Injury Quality of Life Basic Data Set. Spinal Cord 50, 672–675 (2012). https://doi.org/10.1038/sc.2012.27
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DOI: https://doi.org/10.1038/sc.2012.27
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