Spinal cord injury and quality of life: a systematic review of outcome measures
10 May 2011 (online)
Study design: Systematic review.
Study rationale: According to current estimates, there are more than 1 million people living with a spinal cord injury (SCI) in the United States alone. Given the potentially devastating impact of SCI on health-related quality of life (QoL), we sought to gain an improved understanding of QoL outcomes in SCI.
Objective: To identify and describe common QoL outcomes measures in patients with SCI.
Methods: A systematic review of the English-language literature was undertaken for articles published from 1998 through December 2010. Electronic databases and reference lists of key articles were searched to identify measures or indices used to evaluate QoL outcomes in patients with SCI. The titles and abstracts of the SCI peer-reviewed literature were searched to determine which of these outcome measures were most commonly used to evaluate QoL in patients with SCI.
Results: We identified 27 outcome measures used to evaluate QoL in patients with SCI. In SCI literature, the six most commonly used objective outcome measures were the Short-form 36 (SF-36); Craig Handicap Assessment and Reporting Technique (CHART); Short-form 12 (SF-12); Sickness Impact Profile (SIP68); Reintegration to Normal Living Index (RNL); and Community Integration Questionnaire (CIQ). The six subjective measures that were most frequently used were the Satisfaction with Life Scale (SWLS); Quality of Life Index (QLI); Life Satisfaction Questionnaire (LISAT-9/-1); World Health Organization Quality of Life-BREF scale (WHOQOL-BREF); Perceived Quality of Life (PQOL); and global QoL. All six objective measures have been validated in an SCI population, and four of the six subjective measures have been similarly validated. Three of each of the objective and subjective measures have been reliability tested in a population with SCI.
Conclusion: In addition to neurological and functional changes after SCI, QoL outcomes should be routinely assessed. Choice of appropriate QoL measure should be influenced by the study objectives and design, as well as the psychometric properties of the particular measure within the context of SCI.
STUDY RATIONALE AND CONTEXT The World Health Organization’s International Classification of Functioning, Disability and Health encourages the incorporation of a comprehensive definition of health when examining patient-related outcomes after injury or disease 1. Accordingly, in evaluating recovery after spinal cord injury (SCI), there is increasing focus on evaluating patients’ changes in overall well-being, or quality of life (QoL), in addition to neurological and functional changes over time. To date, a QoL outcome assessment tool specific for and validated on patients with SCI remains elusive. One of the greatest challenges in achieving this goal remains creating a tool sensitive to the varied clinical spectrum of SCI, since the definition of QoL may vary dramatically depending on the level and severity of injury. Although we lack an SCI-specific QoL measurement tool, numerous QoL outcome measures intended for use on generic or disease-specific patient populations have been used in studies examining recovery after SCI. OBJECTIVES To identify and describe QoL outcome measures commonly used to assess patients with SCI and to evaluate which of these tools is most appropriate for the SCI population. MATERIALS AND METHODS Study design: Systematic review. Sampling: Search: PubMed; bibliographies of key articles. Dates searched: 1998 through December 2010. Inclusion criteria: (1) spinal cord injury (SCI); (2) adults 18 years and older; (3) studies reporting on QoL outcome measures. Exclusion criteria: (1) cancer; (2) infection; (3) children or adolescents. Outcomes: QoL stratified as „objective quality of life” or „subjective quality of life”2. Objective QoL refers to fulfilling the cultural and societal definitions of material wealth, social status, and physical well-being. Subjective QoL considers individuals‘ assessment of their emotions, happiness, or satisfaction with respect to their expectations and achievements. Analysis: identification of QoL outcome measures commonly reported in studies of patients with SCI and estimation of the frequency of their use in the SCI literature. Details about methods can be found in the web appendix at www.aospine.org / ebsj.
- 1 World Health Organization .World Health Organization International Classification of Functioning, Disabilities and Health (ICF). Geneva: World Health Organization 2001
- 2 Dijkers M P. Individualization in quality of life measurement: instruments and approaches. Arch Phys Med Rehabil. 2003; 84 (4 Suppl 2) S3-14
- 3 Introduction to the Community Integration Questionnaire .Available at: www.tbims.org/combi / ciq/. Accessed December 17, 2010.
- 4 CIQ Syllabus .Available at: www.tbims.org/combi/ciq/ciqsyl. Accessed December 17, 2010
- 5 Craig Hospital Disability Research Instruments: Craig Handicap Assessment and Reporting Technique-„CHART.” Available at: www.craighospital.org/research/CHART.asp Accessed December 16, 2010
- 6 Guide for use of the CHART: Craig Handicap Assessment and Reporting Technique. Available at: www.craighospital.org/research/CHART Manual.pdf Accessed December 16, 2010
- 7 Reintegration to Normal Living (RNL) Index. Available at: www.scireproject.com/outcome-measures/reintegration-to-normal-living-rnl-index Accessed December 17, 2010
- 8 Reintegration to Normal Living (RNL) Index. Available at: www.medicine.mcgill.ca/strokengine-assess/pdf/RNLI.pdf Accessed December 17, 2010
- 9 Post M W, de Bruin A, de Witte L. et al . The SIP68: a measure of health-related functional status in rehabilitation medicine. Arch Phys Med Rehabil. 1996; 77 (5) 440-445
- 10 Ware Jr J, Kosinski M, Keller S D. A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996; 34 220-233
- 11 Ware Jr J E, Sherbourne C D. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992; 30 473-483
- 12 Fugl-Meyer A R, Bränholm I B, Fugl-Meyer K S. Happiness and domain-specific life satisfaction in adult northern Swedes. Clin Rehabil. 1991; 5 25-33
Full reference list can be found in the web appendix at www.aospine.org/ebsj.