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A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS)

Abstract

Study design

Mixed methods inquiry using cognitive interviews and thematic content analysis.

Objectives

Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items.

Setting

International, community.

Methods

Semi-structured cognitive interviews with 51 participants across five sites and four countries. Participants with spinal cord injury/disease (SCI/D) completed the SCI QoL-BDS items and one additional question. Interviews were audio recorded and transcribed. Transcripts were coded using NVivo software. Coded data were analyzed using thematic content analysis. Seventeen themes were identified. Responses by sites were compared for conceptual equivalence.

Results

Across the five sites, equivalence in the conceptual meaning of QoL was found based on the frequent commonalities in terminology employed to describe it. Despite sample differences in terms of demographic and SCI characteristics, participants across all sites replied to the SCI QoL-BDS items in a similar way, suggesting good item equivalence. Qualitatively, the differences noted with respect to the use of themes for each question suggest some variability on how participants with SCI/D describe QoL. In spite of these contextual differences, there is a high degree of commonalty not explained by participants’ demographic or injury/disease characteristics.

Conclusions

The SCI QoL-BDS shows good cross-cultural validity among the international sites included in this study.

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Data availability

De-identified datasets used for this portion of the study can be made available upon request based on and following completion of a data sharing agreement.

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Acknowledgements

The authors wish to thank those individuals who shared their stories, insights, and experiences with us. Further, we thankfully acknowledge the contributions by the local research team members across the five sites for their tireless assistance. Ann Arbor: Constance Pines and Christopher Graves; Denver: Jennifer Coker, Abbey Welch, and Bria MacIntyre; Melbourne: Diana Ramirez Hernandez, São Paulo: Angelica Castilho, Alexandra Cristoffi, and Carle Witter; Utrecht: Christel van Leeuwen. We hope that this work honors the time and energy they have given us.

Funding

This work was supported with a grant from the Craig H Neilsen Foundation, California, USA, grant application ID number 440840.

Author information

Authors and Affiliations

Authors

Contributions

ER led qualitative data analysis, contributed to development and confirmation of findings, developed Tables 25 and supplementary tables, and wrote the paper post-introduction. MP contributed to study design, data collection, data analysis, development and confirmation of findings, and conceptualization and revisions of the paper. AH contributed to data collection, data analysis, development and confirmation of findings, and revisions of the paper. MF led quantitative analysis, contributed to development and confirmation of findings, and revisions of the paper. SC, JMAG, and PN contributed to study design and data collection, and provided feedback on the paper. DT contributed to the design of the study, data collection, data analysis, development and confirmation of findings, conceptualization and revisions of the paper, and wrote the paper introduction.

Corresponding author

Correspondence to Edward J. Rohn.

Ethics declarations

Competing interests

The authors declare no competing interests.

Ethics approval

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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Rohn, E.J., Hakbijl-van der Wind, A.J., Post, M.W.M. et al. A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS). Spinal Cord 60, 177–186 (2022). https://doi.org/10.1038/s41393-021-00742-1

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