COSMIN database

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

Whitehurst, D. G., Noonan, V. K., Dvorak, M. F., and Bryan, S.
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.
Spinal Cord
1476-5624 (Electronic)
Publication year:
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Children (0-18)
Seniors (65+)
Diseases of and symptoms related to the nervous system
Injury, poisoning and certain other consequences of external causes
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
15D - 15 Dimensional Health-Related Quality Of Life Measure   
AQOL-4D - Assessment of Quality of Life 4D
AQoL-6D - Assessment of Quality of Life-6D
EQ-5D-5L - euroQoL 5-dimension 5-level
EQ-5D - EuroQoL-5 Dimensions   
HUI-2 - Health Utilities Index Mark 2
HUI-3 - Health Utilities Index-Mark 3
QWB - Quality of Well-Being Scale
QWB-SA - Quality of Well Being Self-administered Scale
SF-6D - Short-Form 6D (derived from SF-36 or F-12)