ABSTRACT
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:
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.
RESULTS
We identified 27 QoL outcome measures used in the SCI literature that met our inclusion
criteria (Fig [1]). Fifteen of these measurement tools may be considered objective, while twelve are
subjective in nature. We determined the frequency of use of each measure in the SCI
literature (1998 through December 2010) as reported in the abstract: the six most
commonly reported objective and subjective measures are further described.
Objective outcome measures used to evaluate QoL in patients with SCI (Fig [1] and Table [1])
-
Fifteen objective outcome measures were identified.
-
The six most commonly used objective outcome measures were: 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). A summary of each outcome measure is available in
Table [1].
-
Of these,
-
None were developed in an SCI population: three are specific to patients with disabilities
and/or injuries (CIQ, CRAIG, and RNL), while three were developed for the generic
patient population.
-
All have been validated in an SCI population.
-
Three have been tested for reliability in an SCI population.
These six objective measures were developed to evaluate the following outcomes: community
integration following traumatic brain injury (CIQ)[3], [4]; level of handicap (CHART)[5], [6]; satisfaction with activities of daily living following an incapacitating illness
or trauma (RNL)[7], [8]; health-related changes in behavior associated with the activities of daily living
(SIP68)[9]; and general function and well-being (SF-36 and SF-12)[10], [11].
Subjective outcome measures used to evaluate QoL in patients with SCI (Fig [1] and Table [2])
-
Twelve subjective outcome measures were identified.
-
The six most commonly used objective outcome measures were: 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. The scale and interpretation of each is summarized
in Table [1].
Of these,
-
All were developed in a generic population, though an SCI-specific version of the
QLI is available.
-
Four have been validated in an SCI population.
-
Three have been tested for reliability in an SCI population.
These six subjective outcome measures were designed to assess the following: life
satisfaction in various life domains (LISAT-9/-1 [12], [13], PQOL [14], QLI [14], and WHOQOL-BREF [15], [16]); and overall perception
of QoL or life satisfaction (SWLS [17]; global QoL scale).
EDITORIAL STAFF PERSPECTIVE
The reviewers were unanimous in their approval of this systematic review, and congratulate
the authors on identifying this major deficiency in the assessment of spinal cord
injury (SCI) outcomes. To our knowledge, this article presents the most comprehensive
and systematically organized assessment of outcomes tests used for patients with SCI
to date. The findings of this review clearly call into question the continued absence
of more specifically developed and validated grading and outcomes tests for the large
and ever-growing SCI population.
