Objective: To develop a calibrated item bank and computer adaptive test (CAT) to assess the effects of stigma on health-related quality of life in individuals with spinal cord injury (SCI).
Design: Grounded-theory based qualitative item development methods, large-scale item calibration field testing, confirmatory factor analysis, and item response theory (IRT)-based psychometric analyses.
Setting: Five SCI Model System centers and one Department of Veterans Affairs medical center in the United States.
Participants: Adults with traumatic SCI.
Main outcome measures: SCI-QOL Stigma Item Bank
Results: A sample of 611 individuals with traumatic SCI completed 30 items assessing SCI-related stigma. After 7 items were iteratively removed, factor analyses confirmed a unidimensional pool of items. Graded Response Model IRT analyses were used to estimate slopes and thresholds for the final 23 items.
Conclusions: The SCI-QOL Stigma item bank is unique not only in the assessment of SCI-related stigma but also in the inclusion of individuals with SCI in all phases of its development. Use of confirmatory factor analytic and IRT methods provide flexibility and precision of measurement. The item bank may be administered as a CAT or as a 10-item fixed-length short form and can be used for research and clinical applications.
Keywords: Health-Related Quality of Life; Outcomes Assessment (Healthcare); Patient Reported Outcomes; Social Stigma; Spinal Cord Injuries.