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.