Responsiveness of the International Spinal Cord Injury Quality of Life Basic Data Set V2.0: An international longitudinal study

Abstract

Context/Objective: Examine the sensitivity of the International Spinal Cord Injury Quality of Life Basic Data Set V2.0 (QoL-BDS V2.0) to reflect changes in mobility and secondary health conditions (SHCs) between inpatient rehabilitation and one-year follow-up. Design: International longitudinal study. Questionnaires were administered at baseline (Median 6 weeks, interquartile range 4-10 weeks post-onset) and after 12 months. Setting: Spinal cord rehabilitation institutions in the US, Brazil, Australia and the Netherlands. Participants: : Individuals with recent onset of spinal cord injury or disease (SCI/SCD) admitted to inpatient rehabilitation.Outcome measures: The QoL-BDS V2.0, comprises four items on satisfaction with 'life as a whole', 'physical health', 'psychological health', and 'social life'. Mobility level was measured with a single item and SHCs with the SCI Secondary Conditions Scale (SCI-SCS). Results: Of the 160 participants, 61% had SCI, 48% had tetraplegia and 82% were wheelchair-users. Scores on 'life as a whole', 'physical health' and the total scale were significantly higher at follow-up compared to baseline in the total sample and the SCD subgroup, but not in the SCI subgroup. Increases in 'physical health', 'psychological health', 'social life' and the total score were significantly associated with improvements in the SCI-SCS or mobility scores. Participants with improved SCI-SCS and mobility at follow-up showed significantly more improvement in satisfaction with social life and the total score compared to participants without such favorable changes. Conclusion:The results of this study provide partial evidence of responsiveness of the QoL-BDS V2.0 total score as a measure of QoL among individuals with SCI/SCD.