A review of preference-based health-related quality of life questionnaires in spinal cord injury research

Spinal Cord. 2012 Sep;50(9):646-54. doi: 10.1038/sc.2012.46. Epub 2012 May 29.


Study design: Systematic review.

Objectives: Review the use of generic preference-based measures of health-related quality of life (HRQoL) within the context of spinal cord injury (SCI).

Methods: A systematic search was conducted to identify SCI-related publications that contained any of the following preference-based HRQoL instruments: 15D, Assessment of Quality of Life (AQoL)-4D, AQoL-6D, EQ-5D, EQ-5D-5L, Health Utilities Index (HUI)-2, HUI-3, Quality of Well-Being Scale Self-Administered (QWB-SA), SF-6D(SF-36) or SF-6D(SF-12). In addition to providing an overview of how different preference-based measures have been adopted in SCI research to-date, a focus of evaluation was to collate and appraise evidence for measurement properties and identify knowledge gaps.

Results: Twenty-two articles were identified. No studies have used preference-based measures in their conventional form, that is, to calculate quality-adjusted life years using patient-level data. Eleven papers reported mean utility scores (across six different instruments). Directly comparable data exists for only one SCI-specific sample, which showed variation across EQ-5D (0.63), HUI-2 (0.81) and HUI-3 (0.68) index scores. Indirect comparisons suggested differences between QWB-SA and SF-6D index scores within tetraplegic and paraplegic patient groups. Only the QWB-SA and SF-6D have undergone (partial) psychometric evaluation, with the respective authors concluding that the measures have potential for SCI research.

Conclusions: Despite 'cost-effectiveness' being an increasingly important consideration for decision makers in all areas of health care, there is a distinct lack of conceptual or empirical research regarding the appropriateness of alternative preference-based HRQoL measures for SCI populations. Given the support for economic evaluation within a cost-utility framework and the paucity of psychometric evidence regarding current instruments, further research is needed.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review
  • Systematic Review

MeSH terms

  • Empirical Research*
  • Humans
  • Patient Preference / psychology*
  • Quality of Life / psychology*
  • Spinal Cord Injuries / psychology*
  • Spinal Cord Injuries / therapy*
  • Surveys and Questionnaires*