Spinal Cord Injury Quality Of Life Research Articles

Measuring grief and loss after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Grief and Loss item bank and short form

ObjectiveTo develop an item response theory (IRT) calibrated Grief and Loss item bank as part of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system.DesignA literature review guided framework development of grief/loss. New items were created from focus groups. Items were revised based on expert review and patient feedback and were then field tested. Analyses included confirmatory factor analysis (CFA), graded response IRT modeling and evaluation of differential item functioning (DIF).SettingWe tested a 20-item pool at several rehabilitation centers across the United States, including the University of Michigan, Kessler Foundation, Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital and the James J. Peters/Bronx Department of Veterans Affairs hospital.ParticipantsA total of 717 individuals with SCI answered the grief and loss questions.ResultsThe final calibrated item bank resulted in 17 retained items. A unidimensional model was observed (CFI = 0.976; RMSEA = 0.078) and measurement precision was good (theta range between −1.48 to 2.48). Ten items were flagged for DIF, however, after examination of effect sizes found this to be negligible with little practical impact on score estimates.ConclusionsThis study indicates that the SCI-QOL Grief and Loss item bank represents a psychometrically robust measurement tool. Short form items are also suggested and computer adaptive tests are available.

Development and psychometric characteristics of the SCI-QOL Pressure Ulcers scale and short form

ObjectiveTo develop a self-reported measure of the subjective impact of pressure ulcers on health-related quality of life (HRQOL) in individuals with spinal cord injury (SCI) as part of the SCI quality of life (SCI-QOL) measurement system.DesignGrounded-theory based qualitative item development methods, large-scale item calibration testing, confirmatory factor analysis (CFA), and item response theory-based psychometric analysis.SettingFive SCI Model System centers and one Department of Veterans Affairs medical center in the United States.ParticipantsAdults with traumatic SCI.Main Outcome MeasuresSCI-QOL Pressure Ulcers scale.Results189 individuals with traumatic SCI who experienced a pressure ulcer within the past 7 days completed 30 items related to pressure ulcers. CFA confirmed a unidimensional pool of items. IRT analyses were conducted. A constrained Graded Response Model with a constant slope parameter was used to estimate item thresholds for the 12 retained items.ConclusionsThe 12-item SCI-QOL Pressure Ulcers scale is unique in that it is specifically targeted to individuals with spinal cord injury and at every stage of development has included input from individuals with SCI. Furthermore, use of CFA and IRT methods provide flexibility and precision of measurement. The scale may be administered in its entirety or as a 7-item “short form” and is available for both research and clinical practice.

Development and psychometric characteristics of the SCI-QOL Bladder Management Difficulties and Bowel Management Difficulties item banks and short forms and the SCI-QOL Bladder Complications scale

ObjectiveTo describe the development and psychometric properties of the Spinal Cord Injury – Quality of Life (SCI-QOL) Bladder Management Difficulties and Bowel Management Difficulties item banks and Bladder Complications scale.DesignUsing a mixed-methods design, a pool of items assessing bladder and bowel-related concerns were developed using focus groups with individuals with spinal cord injury (SCI) and SCI clinicians, cognitive interviews, and item response theory (IRT) analytic approaches, including tests of model fit and differential item functioning.SettingThirty-eight bladder items and 52 bowel items were tested at the University of Michigan, Kessler Foundation Research Center, the Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital, and the James J. Peters VA Medical Center, Bronx, NY.ParticipantsSeven hundred fifty-seven adults with traumatic SCI.ResultsThe final item banks demonstrated unidimensionality (Bladder Management Difficulties CFI = 0.965; RMSEA = 0.093; Bowel Management Difficulties CFI = 0.955; RMSEA = 0.078) and acceptable fit to a graded response IRT model. The final calibrated Bladder Management Difficulties bank includes 15 items, and the final Bowel Management Difficulties item bank consists of 26 items. Additionally, 5 items related to urinary tract infections (UTI) did not fit with the larger Bladder Management Difficulties item bank but performed relatively well independently (CFI = 0.992, RMSEA = 0.050) and were thus retained as a separate scale.ConclusionThe SCI-QOL Bladder Management Difficulties and Bowel Management Difficulties item banks are psychometrically robust and are available as computer adaptive tests or short forms. The SCI-QOL Bladder Complications scale is a brief, fixed-length outcomes instrument for individuals with a UTI.

Review of cross-cultural issues related to quality of life after spinal cord injury.

Quality of life (QOL) is a dynamic concept that means different things to different people, both in the general public and within the research community. Because of this, a common definition of QOL has been hard to achieve. This article reviews cross-cultural issues related to QOL research in spinal cord injury (SCI). Many factors influence QOL for persons with SCI, including observable and objective indicators and subjective self-report ones. The World Health Organization's International Classification of Function, Disability and Health is used in this article as a framework to better understand how these factors may influence QOL. A number of important steps are summarized with respect to measurement issues in QOL. A comparison between data from 2 countries (United States and Brazil) using the International SCI QOL Basic Data Set shows similarities in scores and good reliability in the Brazilian sample. Substantial, significant correlations were observed among the SCI QOL Basic Data Set items and the WHOQOL-BREF within the US sample. The article ends with a set of recommendations for the development of cross-cultural measures of QOL for use in the SCI population.

Quality of life in persons with spinal cord injury: comparisons with other populations

The aim of this study was to identify the quality of life (QOL) measures commonly used to assess patients with spinal cord injury (SCI) and to summarize studies using common QOL measures that have been validated in SCI populations to compare scores in persons with SCI with those in a control population. A systematic search of PubMed was conducted to identify studies using common QOL measures in persons with SCI and those comparing scores for QOL measures in an SCI population with scores in other populations. The authors sought comparative studies utilizing QOL measures for which validity and reliability analyses had been done. Of 28 QOL measures found, validity and reliability studies had been conducted in patients with SCI for 5 measures. Twelve comparative studies compared QOL in SCI patients with QOL in healthy controls or in patients with other disabilities, or with normative data. The 36-Item Short Form Health Survey (SF-36) and the short version of the WHOQOL (WHOQOL-BREF) were the most widely used QOL instruments. Patients with SCI had a decreased QOL as compared with that in healthy controls or normative data, with the most pronounced deficits in the domains of physical functioning and physical role limitations. In 3 studies, patients with tetraplegia had a lower physical domain QOL than did those with paraplegia. Overall, however, the impact of injury level and injury completeness on QOL after SCI remains unclear due to a lack of longitudinal studies. The SF-36 and WHOQOL-BREF are validated instruments that should be considered for use in SCI QOL studies. Future analysis of deficits in QOL among patients with SCI would benefit from the development of a QOL instrument specifically targeted to SCI. Longitudinal studies to assess the impact of injury level and injury completeness on SCI QOL are also needed.

International Spinal Cord Injury Quality of Life Basic Data Set

Survey of expert opinion, feedback, and development of final consensus. Present the background, purpose, development process and results for the International Spinal Cord Injury (SCI) Quality of Life (QoL) Basic Data Set. International. A committee of experts was established to select and define data elements to be included in an International SCI QoL Basic Data Set. A draft data set was developed and disseminated to appropriate organizations for comment. All suggested revisions were considered, and a final version of the QoL data set was completed. The QoL data set consists of 3 variables: ratings of satisfaction with general quality of life, satisfaction with physical health, and satisfaction with psychological health. All variables are rated on a scale ranging from 0 (completely dissatisfied) to 10 (completely satisfied). Collection of the International SCI QoL Basic Data Set variables should be a part of all future studies of SCI QoL to facilitate comparison of results across published studies from around the world. Additional standardized instruments to assess other aspects of QoL can be administered based on the purpose of a particular study.

Article 3: Development of a Quality of Life Scale Targeted at Persons With Spinal Cord Injury

Objective: To develop a scale to accurately measure the quality of life (QOL) of persons with spinal cord injury (SCI). Design: Structured interview/survey. Setting: An SCI care clinic within a hospital. Participants: 108 patients with SCI. Sample stratified by the following variables: diagnosis (tetraplegia vs paraplegia); severity of injury (complete vs incomplete injury; and time postinjury (<1y, 1–2y, >2y). Interventions: Not applicable. Main Outcome Measures: Pilot SCI QOL items, Diener Satisfaction With Life Scale (SWLS), Medical Outcomes Study 12-Item Short-Form Health Survey (SF-12), and Functional Assessment of Cancer Therapies–General (FACT-G).

Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings

Quality of life (QoL) is increasingly becoming a key concept in research and clinical services. However, no agreement exists on what QoL is and how it is to be measured. This paper reviews three different yet linked approaches to QoL conceptualization: QoL as subjective well-being; QoL as achievement; and QoL as utility. People with spinal cord injury (SCI) tend to report fewer feelings of well-being, on average, than nondisabled persons; score lower on physical, mental, and social health and in other domains of life that people consider important to life quality; and have a health state that is preferred much less than that of the average person. Many QoL instruments used in SCI research have not been validated for this group, or have questionable assumptions, and clinical applications of QoL measures still have many problems. Much SCI QoL research tends to be atheoretical.