Abstract
Study design
Psychometric study.
Objectives
To examine the reproducibility of the international spinal cord injury quality of life basic data set (QoL-BDS) in an international sample of community-dwelling adults with spinal cord injury or disease (SCI/SCD) and in subgroups with respect to age (< 50 vs. ≥ 50 years) and etiology.
Setting
Outpatient rehabilitation clinics and community.
Methods
Participants were people living with SCI/D in four countries, at least 1 year post onset and at least 18 years of age. The QoL-BDS consists of three items on satisfaction with life as a whole, physical health and psychological health rated on a 0–10 numerical rating scale. A fourth item on satisfaction with social life was included based on feedback from participants.
Results
A total of 79 people were included. Median age was 52 years. Most participants (69.6%) had SCI, paraplegia (53%), and 40.5% reported a motor complete injury. Median time between tests was 14 days (range 4–27). Intra-class correlation (ICC) values of the items ranged from 0.66 to 0.80. ICC values of the three-item and four-item total scores were identical and good (0.83; 95% CI 0.75–0.89). Subgroup analyses showed ICC values ranging from 0.76 to 0.83. Bland–Altman plots suggested no bias for the three-item total score, but some bias for the four-item total score. The limits of agreement of both scores were similar, wide at individual level and small at group level.
Conclusions
This study provides evidence of reproducibility of the current version of the QoL-BDS. When adding a fourth item, reproducibility was maintained.
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Acknowledgements
We thankfully acknowledge the contributions by the local research team members. Melbourne: Diana Ramirez Hernandez; Sao Paulo: Angelica Castilho, Alexandra Cristoffi and Carla Witter; Colorado: Jennifer Coker, Abbey Welch and Bria MacIntyre; Michigan: Constance Pines and Christopher Graves; Utrecht: Christel van Leeuwen and Aline van der Wind.
Funding
This study was funded by the Craig H. Neilsen foundation, grant application ID number 440840.
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Contributions
MWMP contributed to the data collection, analyzed the data and wrote the manuscript. MBF organized the data collection, managed the database and provided feedback on the manuscript. SC, JMAG, and PN contributed to the data collection and provided feedback on the manuscript. DGT obtained funding for the study, contributed to the data collection, and provided feedback on the manuscript. All authors were involved in the study design.
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The authors declare that they have no conflict of interest.
Statement of ethics
The research protocol was approved by the University of Michigan Medical School Institutional Review Board, protocol number HUM00126164 and HUM00125769. For the Netherlands, permission to execute the study was granted by the Board of Directors of De Hoogstraat after positive advice of the Institute Review Board on 27 July 2017. For Brazil, the research protocol was approved by the Medical Ethics Committee of the Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo in April 2018. Approbation number CAAE:283112917.3.0000.0068. For Australia, the project was approved by the Alfred Hospital Ethics Committee on 14 June 2017 (project no 203/17). We certify that all applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during the course of this research.
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Post, M.W.M., Forchheimer, M.B., Charlifue, S. et al. Reproducibility of the international spinal cord injury quality of life basic data set: an international psychometric study. Spinal Cord 57, 992–998 (2019). https://doi.org/10.1038/s41393-019-0302-4
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DOI: https://doi.org/10.1038/s41393-019-0302-4
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