Pamela A. Kisala

Environmental Barriers and Supports to Everyday Participation: A Qualitative Insider Perspective From People With Disabilities

OBJECTIVE To describe environmental factors that influence participation of people with disabilities. DESIGN Constant comparative, qualitative analyses of transcripts from 36 focus groups across 5 research projects. SETTING Home, community, work, and social participation settings. PARTICIPANTS Community-dwelling people (N=201) with diverse disabilities (primarily spinal cord injury, traumatic brain injury, and stroke) from 8 states. INTERVENTIONS None. MAIN OUTCOME MEASURES Environmental barriers and supports to participation. RESULTS We developed a conceptual framework to describe how environmental factors influence the participation of people with disabilities, highlighting 8 domains of environmental facilitators and barriers (built, natural, assistive technology, transportation, information and technology access, social support and attitudes, systems and policies, economics) and a transactional model showing the influence of environmental factors on participation at the micro (individual), mesa (community), and macro (societal) levels. Focus group data validated some International Classification of Functioning, Disability and Health environmental categories while also bringing unique factors (eg, information and technology access, economic quality of life) to the fore. Data were used to construct items to enable people with disabilities to assess the impact of environmental factors on everyday participation from their firsthand experience. CONCLUSIONS Participants with disabilities voiced the need to evaluate the impact of the environment on their participation at the immediate, community, and societal levels. The results have implications for assessing environmental facilitators and barriers to participation within rehabilitation and community settings, evaluating outcomes of environmental interventions, and effecting system and policy changes to target environmental barriers that may result in societal participation disparities versus opportunities.

Overview of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system

Abstract Context/Objective The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue. Design Classical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample (n = 877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI (n = 245). Setting Five Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States. Participants Adults with traumatic SCI. Interventions n/a Outcome Measures n/a Results The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL). Conclusion The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.

Spinal cord injury-functional index: item banks to measure physical functioning in individuals with spinal cord injury.

OBJECTIVES To develop a comprehensive set of patient-reported items to assess multiple aspects of physical functioning relevant to the lives of people with spinal cord injury (SCI), and to evaluate the underlying structure of physical functioning. DESIGN Cross-sectional. SETTING Inpatient and community. PARTICIPANTS Item pools of physical functioning were developed, refined, and field tested in a large sample of individuals (N=855) with traumatic SCI stratified by diagnosis, severity, and time since injury. INTERVENTIONS None. MAIN OUTCOME MEASURE Spinal Cord Injury-Functional Index (SCI-FI) measurement system. RESULTS Confirmatory factor analysis (CFA) indicated that a 5-factor model, including basic mobility, ambulation, wheelchair mobility, self-care, and fine motor function, had the best model fit and was most closely aligned conceptually with feedback received from individuals with SCI and SCI clinicians. When just the items making up basic mobility were tested in CFA, the fit statistics indicated strong support for a unidimensional model. Similar results were demonstrated for each of the other 4 factors, indicating unidimensional models. CONCLUSIONS Though unidimensional or 2-factor (mobility and upper extremity) models of physical functioning make up outcomes measures in the general population, the underlying structure of physical function in SCI is more complex. A 5-factor solution allows for comprehensive assessment of key domain areas of physical functioning. These results informed the structure and development of the SCI-FI measurement system of physical functioning.

Development and initial evaluation of the spinal cord injury-functional index.

OBJECTIVES To describe the calibration of the Spinal Cord Injury-Functional Index (SCI-FI) and report on the initial psychometric evaluation of the SCI-FI scales in each content domain. DESIGN Cross-sectional survey followed by calibration data simulations. SETTING Inpatient and community settings. PARTICIPANTS A sample of participants (N=855) with traumatic spinal cord injury (SCI) recruited from 6 SCI Model Systems and stratified by diagnosis, severity, and time since injury. INTERVENTIONS None. MAIN OUTCOME MEASURE SCI-FI instrument. RESULTS Item response theory analyses confirmed the unidimensionality of 5 SCI-FI scales: basic mobility (54 items), fine motor function (36 items), self-care (90 items), ambulation (39 items), and wheelchair mobility (56 items). All SCI-FI scales revealed strong psychometric properties. High correlations of scores on simulated computer adaptive testing (CAT) with the overall SCI-FI domain scores indicated excellent potential for CAT to accurately characterize functional profiles of adults with SCI. Overall, there was very little loss of measurement reliability or precision using CAT compared with the full item bank; however, there was some loss of reliability and precision at the lower and upper ranges of each scale, corresponding to regions where there were few questions in the item banks. CONCLUSIONS Initial evaluation revealed that the SCI-FI achieved considerable breadth of coverage in each content domain and demonstrated acceptable psychometric properties. The use of CAT to administer the SCI-FI will minimize assessment burden, while allowing for the comprehensive assessment of the functional abilities of adults with SCI.

TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury.

Objective:To use a patient-centered approach or participatory action research design combined with advanced psychometrics to develop a comprehensive patient-reported outcomes (PRO) measurement system specifically for individuals with traumatic brain injury (TBI). This TBI Quality-of-Life (TBI-QOL) measurement system expands the work of other large PRO measurement initiatives, that is, the Patient-Reported Outcomes Measurement Information System and the Neurology Quality-of-Life measurement initiative. Setting:Five TBI Model Systems centers across the United States. Participants:Adults with TBI. Design:Classical and modern test development methodologies were used. Qualitative input was obtained from individuals with TBI, TBI clinicians, and caregivers of individuals with TBI through multiple methods, including focus groups, individual interviews, patient consultation, and cognitive debriefing interviews. Item pools were field tested in a large multisite sample (n = 675) and calibrated using item response theory methods. Main Outcomes Measures:Twenty-two TBI-QOL item banks/scales. Results:The TBI-QOL consists of 20 independent calibrated item banks and 2 uncalibrated scales that measure physical, emotional, cognitive, and social aspects of health-related quality of life. Conclusions:The TBI-QOL measurement system has potential as a common data element in TBI research and to enhance collection of health-related quality-of-life and PRO data in rehabilitation research and clinical settings.

Developing a contemporary functional outcome measure for spinal cord injury research

Study design:This study used qualitative analysis of focus group discussions.Objective:The primary objective was to select functional activities to include in an item pool, which is the first step in developing a spinal cord injury computer adaptive test (SCI-CAT).Setting:This multisite study was conducted at six US National Spinal Cord Injury Model Systems Programs.Methods:Focus group discussions, which included persons with tetraplegia and paraplegia and clinicians, were conducted. Transcripts were analyzed using a grounded theory approach. Functional activities were identified, binned, winnowed, written as functional items, and cognitively tested.Results:Focus group discussion analysis identified 326 functional activity items that fit into categories outlined in the International Classification of Functioning, Disability and Health (ICF) framework: Mobility (193 items), including assessment of functioning in a manual (44 items) and power wheelchair (19 items); self-care (109 items); and communication (19 items). Items related to sexual function were also identified (5 items).Conclusion:The SCI-CAT item pool includes items that assess functional activities important to persons with SCI. Items cover a wide range of functional ability and reflect most ICF categories. The SCI-CAT pool is currently being field tested to develop a calibrated item bank. Further development will yield a CAT of functional activities appropriate for SCI research.

Methodology for the development and calibration of the SCI-QOL item banks

Abstract Objective To develop a comprehensive, psychometrically sound, and conceptually grounded patient reported outcomes (PRO) measurement system for individuals with spinal cord injury (SCI). Methods Individual interviews (n = 44) and focus groups (n = 65 individuals with SCI and n = 42 SCI clinicians) were used to select key domains for inclusion and to develop PRO items. Verbatim items from other cutting-edge measurement systems (i.e. PROMIS, Neuro-QOL) were included to facilitate linkage and cross-population comparison. Items were field tested in a large sample of individuals with traumatic SCI (n = 877). Dimensionality was assessed with confirmatory factor analysis. Local item dependence and differential item functioning were assessed, and items were calibrated using the item response theory (IRT) graded response model. Finally, computer adaptive tests (CATs) and short forms were administered in a new sample (n = 245) to assess test-retest reliability and stability. Participants and Procedures A calibration sample of 877 individuals with traumatic SCI across five SCI Model Systems sites and one Department of Veterans Affairs medical center completed SCI-QOL items in interview format. Results We developed 14 unidimensional calibrated item banks and 3 calibrated scales across physical, emotional, and social health domains. When combined with the five Spinal Cord Injury – Functional Index physical function banks, the final SCI-QOL system consists of 22 IRT-calibrated item banks/scales. Item banks may be administered as CATs or short forms. Scales may be administered in a fixed-length format only. Conclusions The SCI-QOL measurement system provides SCI researchers and clinicians with a comprehensive, relevant and psychometrically robust system for measurement of physical-medical, physical-functional, emotional, and social outcomes. All SCI-QOL instruments are freely available on Assessment CenterSM.

NIH toolbox cognition battery (NIHTB-CB): List sorting test to measure working memory

The List Sorting Working Memory Test was designed to assess working memory (WM) as part of the NIH Toolbox Cognition Battery. List Sorting is a sequencing task requiring children and adults to sort and sequence stimuli that are presented visually and auditorily. Validation data are presented for 268 participants ages 20 to 85 years. A subset of participants (N=89) was retested 7 to 21 days later. As expected, the List Sorting Test had moderately high correlations with other measures of working memory and executive functioning (convergent validity) but a low correlation with a test of receptive vocabulary (discriminant validity). Furthermore, List Sorting demonstrates expected changes over the age span and has excellent test-retest reliability. Collectively, these results provide initial support for the construct validity of the List Sorting Working Memory Measure as a measure of working memory. However, the relationship between the List Sorting Test and general executive function has yet to be determined.

Key dimensions of impairment, self-report, and environmental supports in persons with traumatic brain injury.

PURPOSE/OBJECTIVES To determine key dimensions relevant to recovery in the postacute period for persons with traumatic brain injury (TBI) and to determine the ability of scores on these dimensions to predict participation outcomes for persons with TBI. RESEARCH METHOD/DESIGN This was a prospective cohort, observational study of 504 persons with medically documented TBI. Participants completed a comprehensive battery of measures including cognitive tests; questionnaires assessing self-report of physical, cognitive, and emotional symptoms and strengths; environmental supports; and a measure of participation outcome. RESULTS Participants were a predominantly male, ethnically/racially diverse sample of persons with complicated mild, moderate, and severe TBI. Variable cluster analysis identified 12 key dimensions of cognitive function, neurobehavioral complaints, personal strengths, physical symptoms and function, environmental supports, and performance validity. In unadjusted analyses, all 12 dimensions were predictive of participation outcome. In multivariable regression analysis with adjustment of all predictors for all other predictors, dimensions measuring memory, independence and self-esteem, resilience, emotional distress, physical functioning, and economic and family support made unique contributions to predicting participation outcome. CONCLUSIONS/IMPLICATIONS Findings add to our understanding of key aspects of functioning and self-perception for persons with TBI. Knowledge of the profile of an individual patient on these 12 dimensions may assist with development of a treatment approach for the person with TBI. (PsycINFO Database Record

An Examination of the Wechsler Adult Intelligence Scales, Fourth Edition (WAIS-IV) in Individuals with Complicated Mild, Moderate and Severe Traumatic Brain Injury (TBI)

This study examined the clinical utility of the Wechsler Adult Intelligence Scales-Fourth Edition (WAIS-IV) in individuals with complicated mild, moderate or severe TBI. One hundred individuals with TBI (n = 35 complicated mild or moderate TBI; n = 65 severe TBI) and 100 control participants matched on key demographic variables from the WAIS-IV normative dataset completed the WAIS-IV. Univariate analyses indicated that participants with severe TBI had poorer performance than matched controls on all index scores and subtests (except Matrix Reasoning). Individuals with complicated mild/moderate TBI performed more poorly than controls on the Working Memory Index (WMI), Processing Speed Index (PSI), and Full Scale IQ (FSIQ), and on four subtests: the two processing speed subtests (SS, CD), two working memory subtests (AR, LN), and a perceptual reasoning subtest (BD). Participants with severe TBI had significantly lower scores than the complicated mild/moderate TBI on PSI, and on three subtests: the two processing speed subtests (SS and CD), and the new visual puzzles test. Effect sizes for index and subtest scores were generally small-to-moderate for the group with complicated mild/moderate and moderate-to-large for the group with severe TBI. PSI also showed good sensitivity and specificity for classifying individuals with severe TBI versus controls. Findings provide support for the clinical utility of the WAIS-IV in individuals with complicated mild, moderate, and severe TBI.