Spinal cord injury and quality of life measures: a review of instrument psychometric quality

Introduction: Quality of life (QOL) is often considered the primary endpoint in research, clinical medicine, and health promotion when impairments are incurable or insufficiently understood. For spinal cord injured (SCI) persons extended life spans and the need for lifelong follow-up make it important to expand the outcome parameters of medical care and health services to include QOL measures. Study design: Review. Objectives: The aim of this study was to evaluate QOL research in SCI persons from the perspective of current criteria for instrument psychometric quality developed by Medical Outcomes Trust (MOT). Methods: Relevant articles were extracted from the Medline, Cinahl, and PsycLit databases for approximately a recent 30-year period (1966-1999). The keyword 'spinal cord injuries' was cross-indexed with 'quality of life', 'personal satisfaction' and 'life satisfaction'. A total of 105 articles were identified and 46 met our inclusion criteria: (a) report of original research; (b) evaluation of QOL by self-report questionnaires or scales; and (c) publication in English. Results: The quality of the research designs varied widely. Most of studies were cross-sectional with limited study populations. The number of instruments or different combinations of instruments nearly equalled the number of studies conducted. Most questionnaires were condition-specific and only used by the developers. The variety of instruments and the diversity of their core content made results difficult to compare, and evaluations and conclusions unpredictable and sometimes contradictory. The low psychometric standard of many instruments used further aggravates the interpretation of results. Conclusion: To improve future research in special populations such as the SCI, the MOT criteria for review of QOL instruments should be further disseminated and applied to reach desirable consensus of a limited number of standardised generic and condition-specific QOL measures.