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Purpose To empirically assign severity levels (e.g., mild, moderate) to four relatively new patient-reported outcome measures (PROMs) for adults with acquired cognitive/language disorders. They include the Communicative Participation Item Bank, the Aphasia Communication Outcome Measure, and Neuro-QoL’s item banks of Cognitive Function (v2.0) and Ability to Participate in Social Roles and Activities (v1.0). Method We conducted 17 focus groups that comprised 22 adults with an acquired cognitive/language disorder from stroke, Parkinson’s disease, or traumatic brain injury; 30 care partners of an adult with an acquired cognitive/language disorder; and 42 speech-language pathologists who had experience assessing/treating individuals with those and other cognitive/language disorders. In a small, moderated focus-group format, participants completed “PROM-bookmarking” procedures: They discussed hypothetical vignettes based on PROM item responses about people with cognitive/language disorders and had to reach consensus regarding whether their symptoms/function should be categorized as within normal limits or mild, moderate, or severe challenges. Results There was generally good agreement among the stakeholder groups about how to classify vignettes, particularly when they reflected very high or low functioning. People with aphasia described a larger range of functional communication challenges as “mild” compared to other stakeholder types. Based on a consensus across groups, we present severity levels for specific score ranges for each PROM. Conclusion Standardized, stakeholder-informed severity levels that aid interpretation of PROM scores can help clinicians and researchers derive better clinical meaning from those scores, for example, by identifying important clinical windows of opportunity and assessing when symptoms have returned to a “normal” range.

Objectives To develop clinically relevant interpretive standards for the Spinal Cord Injury – Functional Index/Capacity (SCI-FI/C) Basic Mobility and Self-Care item bank scores. Design Modified “bookmarking” standard-setting methodology, including 2 stakeholder consensus meetings with individuals with spinal cord injury (SCI) and SCI clinicians, respectively, and a final, combined (consumers and clinicians) “convergence” meeting. Setting Two SCI Model System centers in the United States. Participants Fourteen adults who work with individuals with traumatic SCI and 14 clinicians who work with individuals with SCI. Main Outcome Measures Placement of bookmarks between vignettes based on SCI-FI Basic Mobility and Self-Care T scores. Bookmarks were placed between vignettes representing “No Problems,” “Mild Problems,” “Moderate Problems,” and “Severe Problems” for each item bank. Results Each consensus group resulted in a single set of scoring cut points for the SCI-FI/C Basic Mobility and Self-Care item banks. The cut points were similar but not identical between the consumer and clinician groups, necessitating a final convergence meeting. For SCI-FI/C Basic Mobility, the convergence group agreed on cut scores of 61.25 (no problems/mild problems), 51.25 (mild problems/moderate problems), and 41.25 (moderate problems/severe problems). For SCI-FI/C Self-Care, the convergence group agreed on cut scores of 56.25 (no/mild), 51.25 (mild/moderate), and 38.75 (moderate/severe). Conclusions The results of this study provide straightforward interpretive guidelines for SCI researchers and clinicians using the SCI-FI/C Basic Mobility and Self-Care instruments. These results are appropriate for the full bank, computer adaptive test, and short-form versions of the SCI-FI/C Basic Mobility and Self-Care item banks.

Objective Explore trajectories of functional recovery that occur during the first two years after spinal cord injury (SCI). Design Observational cohort study. Setting Eight SCI Model System sites. Participants 479 adults with SCI completed four Spinal Cord Injury-Functional Index (SCI-FI) item banks within 4 months of injury and again at 2 weeks, 3, 6, 12, and 24 months following baseline assessment. Intervention None. Main Outcome Measures SCI-FI Basic Mobility/Capacity (C), Fine Motor Function/C, Self-Care/C, and Wheelchair Mobility/Assistive Technology (AT) item banks. Results Growth mixture modeling was used to identify groups with similar trajectory patterns. For the Basic Mobility/C and Wheelchair Mobility/AT domains, models specifying 2 trajectory groups were selected. For both domains, a majority class exhibited average functional levels and gradual improvement, primarily in the first six months. A smaller group of individuals made gradual improvements but had greater initial functional limitations. The Self Care/C domain exhibited a similar pattern; however, a third, small class emerged that exhibited substantial improvement in the first six months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed two patterns, with individuals reporting generally low initial scores and then making either modest or large improvements. In individual growth curve models, injury/demographic factors predicted initial functional levels but less so with regard to rates of recovery. Conclusions Trajectories of functional recovery followed a small number of change patterns, though variation around these patterns emerged. During the first two years after initial hospitalization, SCI-FI scores showed modest improvements; however, substantial improvements were noted for a small number of individuals with severe limitations in fine motor and self-care function. Future studies should further explore the personal, medical, and environmental characteristics that influence functional trajectories during these first two years and beyond.

Objective To establish responsiveness of 3 Spinal Cord Injury – Functional Index/Capacity (SCI-FI/C) item banks in the first year following SCI. Design Longitudinal patient-reported outcomes assessment replicated through secondary analysis of an independent data set. Setting 8 SCI Model Systems rehabilitation hospitals in the US. Participants Study 1 participants included 184 adults with recent (≤4 months) traumatic SCI and 221 community-dwelling adults (>1 year post injury). Study 2 participants were 418 individuals with recent SCI (≤4 months). Interventions In Study 1, SCI-FI/C computer adaptive tests were presented in a standardized interview format either in person or by phone call at baseline and 6-month follow-up. Responsiveness was examined by comparing 6-month changes in SCI-FI scores within and across samples (recently-injured vs. community-dwelling), as only the recent injury sample was expected to exhibit change over time. Effect sizes were also computed. In Study 2, the Study 1 results were cross-validated in a second recent SCI sample 1 year after baseline measurement. Study 2 also compared the SCI-FI/C measures’ responsiveness to that of the Self Report Functional Measure (SRFM) and stratified results by injury diagnosis and completeness. Main Outcome Measures The SCI-FI Basic Mobility/C, Self-Care/C and Fine Motor/C item banks (Study 1 and Study 2); Self Report Functional Measure (SRFM; Study 2 only). Results In Study 1, changes in SCI-FI/C scores between baseline and 6-month follow-up were statistically significant (p Conclusion The SCI-FI Basic Mobility/C and Self-Care/C banks demonstrate adequate sensitivity to change at 6 months and 1 year for all individuals with SCI, while the SCI-FI/C Fine Motor item bank is sensitive to change in individuals with tetraplegia or incomplete paraplegia. All SCI-FI/C banks demonstrate stability in a sample not expected to change. Results provide support for the use of these measures for research or clinical use.

Background Patient-reported outcome (PRO) measures produce scores that do not always have obvious clinical meaning. The PRO-bookmarking procedure is a new and promising way to make PRO measures more meaningful and interpretable. However, the materials and procedures of the task may benefit from adaptations to be more accessible to individuals with cognitive and language disorders. Aims This study aims to provide an overview of the iterative refinement process used to modify the materials and procedures of the PRO-bookmarking task so that they are more accessible to adults with acquired cognitive and language impairments. Method and Procedures Our team of health psychologists, neuropsychologists, and speech-language pathologists (SLPs) conducted two focus groups with SLPs and care partners of people with aphasia using the same PRO-bookmarking materials and procedures as previous reports. These PRO-bookmarking materials and procedures were then refined iteratively based on discussion with those who participated in focus groups and among the research team, and three more times in the course of 16 additional focus groups of different stakeholders: people with Parkinson's disease, aphasia, or traumatic brain injury; care partners of people with those conditions; and SLPs who have experience with those, and other adult-acquired conditions. Outcomes and Results The PRO-bookmarking materials and procedures underwent four iterations to make them clearer, simpler, and more accessible. For example, the materials included more structured text and graphic supports where appropriate and the procedures were clustered into smaller discrete tasks and displayed graphically when possible and appropriate. Conclusions PRO-bookmarking materials and procedures were made simpler and more structured to increase their accessibility to adults with cognitive and language impairments. In fact, these adaptations made the tasks simpler and clearer for all types of stakeholders.

Objective To develop an item response theory (IRT)-calibrated, patient-reported outcome measure of subjective independence for individuals with traumatic brain injury (TBI). Design Large-scale item calibration field testing; confirmatory factor analysis (CFA) and graded response model IRT analyses. Setting Five TBI Model System centers across the United States. Participants Adults with complicated mild, moderate, or severe TBI (N=556). Outcome Measures Traumatic Brain Injury–Quality of Life (TBI-QOL) Independence item bank and the TBI-QOL Asking for Help scale. Results A total of 556 individuals completed 44 items in the Independence item pool. Initial factor analyses indicated that items related to the idea of “asking for help” were measuring a different construct from other items in the pool. These 9 items were set aside. Twenty-two other items were removed because of bimodal distributions and/or low item-total correlations. CFA supported unidimensionality of the remaining Independence items. Graded response model IRT analysis was used to estimate slopes and thresholds for the final 13 Independence items. An 8-item fixed-length short form was also developed. The 9 Asking for Help items were analyzed separately. One misfitting item was deleted, and the final 8 items became a fixed-length IRT-calibrated scale. Reliability was high for both measures. Conclusions The IRT-calibrated TBI-QOL Independence item bank and short form and TBI-QOL Asking for Help scale may be used to measure important issues for individuals with TBI in research and clinical applications.

The Spinal Cord Injury – Functional Index is a system of patient reported outcomes (PRO) measures of functional activities developed specifically with and for individuals with spinal cord injury (SCI). The SCI-FI was designed to overcome limitations in measurement of the full range of activities and breadth of content of physical functioning commonly used in SCI research. Generic measurement tools of physical function (i.e., those focused on the general population) tend to overemphasize mobility and do not contain enough items at the lower end of the functional range (e.g., appropriate for individuals with tetraplegia). The SCI-FI consists of nine item response theory (IRT)-calibrated item banks that represent relevant and meaningful item content for individuals with SCI, span a wide range of functional abilities, and subdivide physical functioning into important subdomains, including basic mobility, self-care, and fine motor function. Since the original publication of the SCI-FI in 2012, there have been significant advances in and publications on the reliability and psychometric properties of the measures. The manuscripts presented in this special section clarify the SCI-FI structure and present new research on the SCI-FI measurement system.

Objective To develop an item response theory (IRT)-based patient-reported outcome measure of functional communication for adults with traumatic brain injury (TBI). Setting Five medical centers that were TBI Model Systems sites. Participants A total of 569 adults with TBI (28% complicated-mild; 13% moderate; and 58% severe). Design Grounded theory-based qualitative item development, large-scale item calibration testing, confirmatory factor analyses, psychometric analyses with graded response model IRT. Main measure Traumatic Brain Injury-Quality of Life (TBI-QOL) Communication Item Bank, version 1.0. Results From an initial pool of 48 items, 31 items were retained in the final instrument based on adequate fit to a unidimensional model and absence of bias across several demographic and clinical subgroupings. The TBI-QOL Communication Item Bank demonstrated excellent score precision (reliability ≥ 0.95) across a wide range of communication impairment levels, particularly for individuals with more severe difficulties. The TBI-QOL Communication Item Bank is available as a full item bank, fixed-length short form, and as a computerized adaptive test. Conclusions The TBI-QOL Communication Item Bank permits precise measurement of patient-reported functional communication after TBI. Future development will validate the instrument against performance-based, clinician-reported, and surrogate-reported assessments.

Objective To link 3 Spinal Cord Injury–Functional Index (SCI-FI) item banks (Basic Mobility, Fine Motor Function, Self-Care) to the Patient-Reported Outcome Measurement Information System (PROMIS) Physical Function (PF) metric. Design Observational study Setting Six SCI Model Systems rehabilitation hospitals in the United States. Participants Adults with SCI (n=855) and healthy individuals (n=730) (N=1585). Interventions Not applicable. Main Outcome Measures Three SCI-FI item banks (Basic Mobility, Fine Motor Function, Self-Care), PROMIS PF v1.0 item bank. Results SCI-FI item banks (including 30 items from the PROMIS PF item bank) were administered to 855 adults with SCI as part of the original SCI-FI development study. The data were used to attempt to link 3 SCI-FI banks to the PROMIS PF metric via 2 item-response theory methods: fixed-parameter calibration and separate calibration. Sixteen items common to SCI-FI and PROMIS and verified as free of differential item functioning were used as anchor items to implement the methods. Of the 3 banks, only SCI-FI Basic Mobility could be linked with sufficient precision to PROMIS PF. Comparisons of actual vs linked PROMIS PF scores and test characteristic curves suggested the fixed-parameter method provided slightly more precision than the separate calibration method. Conclusions The linkage between PROMIS PF and SCI-FI Basic Mobility was considered satisfactory for group-level usage. Score equivalents computed from SCI-FI Basic Mobility will be useful for researchers comparing functional levels in SCI to those observed in other clinical and nonclinical groups (eg, in comparative effectiveness research).

Objective To evaluate the psychometric properties of the Spinal Cord Injury Functional Index (SCI-FI) instruments in a community-dwelling sample. Design Cross-sectional study. Setting Community setting. Participants Individuals (N=269) recruited from 6 SCI Model Systems sites. Interventions Not applicable. Main Outcome Measures Participants completed computer adaptive test and short form versions of 4 SCI-FI/Capacity (C) banks (ie, Ambulation, Basic Mobility, Fine Motor, Self-Care) and 1 SCI-FI/Assistive Technology (AT) bank (Wheelchair Mobility) at baseline and after 2 weeks. The Self-Report Functional Measure (SRFM) and the clinician-rated motor FIM were used to evaluate evidence of convergent validity. Results Pearson correlations, intraclass correlation coefficients, minimal detectable change, and Bland-Altman plots supported the test-retest reliability of the SCI-FI instruments. Correlations were large with the SRFM (.69-.89) and moderate-to-large for the FIM instrument (.44-.64), supporting convergent validity. Known-groups validity was demonstrated by a significant main effect of injury level on all instruments and a main effect of injury completeness on the SCI-FI/C instruments. A ceiling effect was detected for individuals with incomplete paraplegia on the Fine Motor/C and Self-Care/C Short Forms. Conclusion Findings support the test-retest reliability, convergent validity, and known-groups validity of the SCI-FI/C instruments and the SCI-FI/AT Wheelchair Mobility instruments for use by community-dwelling individuals.

Background: Barriers in the built environment, enduring stereotypes and biases, and limited disability competency of health care providers compromise access to and quality of reproductive health care for women with physical disabilities. One way to improve our understanding of critical factors that drive reproductive health inequity and its impact on access to care is to use patient-reported outcome measures (PROMs) that capture relevant and meaningful information about experience. In this study, we developed a conceptual framework as the foundation for relevant and clinically meaningful patient-reported outcome measures targeting the interface of disability and reproductive health. Materials and Methods: We conducted semistructured focus groups and interviews to assess women's experiences around their reproductive health and contextual factors related to disability. We used deductive and inductive qualitative coding approaches to develop the conceptual framework. Results: Eighty-one women between the ages of 16 and 50 with a self-reported physical disability, defined by an impairment of mobility, participated in 13 focus groups (N = 64) and 17 individual interviews. Five major themes characterized the conceptual framework that emerged—knowledge about reproductive health, communication about reproductive health, relationships, the reproductive health care environment, and self-advocacy/identity—all of which had some relationship with five major reproductive health issues—pregnancy and labor/delivery, periods and menstrual management, contraception, sexuality and sexual functioning, and pelvic examinations. Conclusions: This conceptual framework will serve as a foundation for PROM and guide intervention development to reduce reproductive health inequity and improve reproductive health outcomes of women with physical disabilities.

IntroductionThis study examines the validity and distribution characteristics of the PROMIS® pediatric upper limb measures in a sample of young people with cerebral palsy.MethodData are a cross-sectional subset of a larger prospective study of the responsiveness to change of PROMIS® pediatric measures following surgery to improve functioning in young people with cerebral palsy. Ninety-three participants between the ages of eight and 21 years completed the PROMIS® pediatric mobility and upper limb computer adaptive tests and short forms in conjunction with a set of static “legacy” measures of physical functioning, including a parent-report of upper limb function.ResultsThe PROMIS® Pediatric upper limb short form demonstrated acceptable internal consistency (Cronbach’s alpha = 0.85). PROMIS® pediatric upper limb computer adaptive tests and short form mean values (42.1(11) and 43(10.4), respectively) were nearly 1 SD below normal, which is appropriate when a generic measure is used in a sample of young persons with cerebral palsy. The PROMIS® pediatric upper limb computer adaptive tests had a higher frequency of ceiling effects (29.50%) compared to the short form (18.30%).ConclusionResults of this study suggest that the PROMIS® pediatric upper limb computer adaptive tests and the short form are valid indicators of upper limb function in young people with cerebral palsy. The item bank can be replenished to address ceiling effects.

The primary objective is to provide evidence of convergent and discriminant validity for the pediatric and parent-proxy versions of the Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety, Depression, Anger, Peer Relations, Mobility, Pain Interference, and Fatigue item banks, the Neurology Quality of Life measurement system (Neuro-QOL) Cognition-General Concerns and Stigma item banks, and the Traumatic Brain Injury Quality of Life (TBI-QOL) Executive Function and Headache item banks in a pediatric traumatic brain injury (TBI) sample.Participants were 134 parent-child (ages 8-18 years) days. Children all sustained TBI and the dyads completed outcome ratings 6 months after injury at one of six medical centers across the United States. Ratings included PROMIS, Neuro-QOL, and TBI-QOL item banks, as well as the Pediatric Quality of Life inventory (PedsQL), the Health Behavior Inventory (HBI), and the Strengths and Difficulties Questionnaire (SDQ) as legacy criterion measures against which these item banks were validated.The PROMIS, Neuro-QOL, and TBI-QOL item banks demonstrated good convergent validity, as evidenced by moderate to strong correlations with comparable scales on the legacy measures. PROMIS, Neuro-QOL, and TBI-QOL item banks showed weaker correlations with ratings of unrelated constructs on legacy measures, providing evidence of discriminant validity.Our results indicate that the constructs measured by the PROMIS, Neuro-QOL, and TBI-QOL item banks are valid in our pediatric TBI sample and that it is appropriate to use these standardized scores for our primary study analyses.

OBJECTIVE: To develop modern patient-reported outcome measures that assess pain interference and pain behavior after spinal cord injury (SCI). DESIGN: Grounded-theory based qualitative item development; large-scale item calibration field-testing; confirmatory factor analyses; graded response model item response theory analyses; statistical linking techniques to transform scores to the Patient Reported Outcome Measurement Information System (PROMIS) metric. SETTING: Five SCI Model Systems centers and one Department of Veterans Affairs medical center in the United States. PARTICIPANTS: Adults with traumatic SCI. INTERVENTIONS: N/A. OUTCOME MEASURES: Spinal Cord Injury - Quality of Life (SCI-QOL) Pain Interference item bank, SCI-QOL Pain Interference short form, and SCI-QOL Pain Behavior scale. RESULTS: Seven hundred fifty-seven individuals with traumatic SCI completed 58 items addressing various aspects of pain. Items were then separated by whether they assessed pain interference or pain behavior, and poorly functioning items were removed. Confirmatory factor analyses confirmed that each set of items was unidimensional, and item response theory analyses were used to estimate slopes and thresholds for the items. Ultimately, 7 items (4 from PROMIS) comprised the Pain Behavior scale and 25 items (18 from PROMIS) comprised the Pain Interference item bank. Ten of these 25 items were selected to form the Pain Interference short form. CONCLUSIONS: The SCI-QOL Pain Interference item bank and the SCI-QOL Pain Behavior scale demonstrated robust psychometric properties. The Pain Interference item bank is available as a computer adaptive test or short form for research and clinical applications, and scores are transformed to the PROMIS metric.

As the number of female veterans increases, health care systems must be prepared to meet the individualized needs of this population. To date, published data on health-related quality of life (HRQOL) of veterans with post-traumatic stress disorder (PTSD) focus on quantitative data and primarily represent the male population. The purpose of this study was to qualitatively explore the impact of PTSD on female veterans' HRQOL. A descriptive qualitative study used focus groups and demographic surveys to achieve data collection in a sample of veterans with PTSD. This report focuses on the analysis of a sample of 12 females to explore PTSD HRQOL experiences unique to female veterans. Female veterans reported several areas in which their HRQOL was impacted adversely in social participation, physical, cognitive, and emotional aspects of their lives. Issues with self-medication and substance abuse were also reported by participants. Female participants' perceptions about Veterans Health Administration were also discussed, highlighting unmet needs when receiving care for PTSD. These data provide unique insights from the perspective of female veterans with PTSD about their HRQOL and receiving care within the Veterans Health Administration health care system. These data can inform future research to better address the needs of female veterans living with PTSD.

Objective To develop and calibrate new patient-reported outcome measures of cognitive concerns for individuals with traumatic brain injury (TBI). Setting Five TBI model systems rehabilitation centers in the United States. Participants Adults with medically confirmed history of TBI. Design Cross-sectional survey in interview format. Main measures Traumatic Brain Injury-Quality of Life (TBI-QOL) Executive Function and TBI-QOL Cognition-General Concerns item banks. Results A total of 569 adults with complicated-mild, moderate, or severe TBI completed preliminary item pools, which included 65 Executive Function items and 56 Cognition-General Concerns items. Confirmatory factor analysis supported the retention of 37 Executive Function and 39 Cognition-General Concerns items. Samejima's graded response model was used to estimate item parameters for associated computer adaptive test administrations, and informed the selection of corresponding static short forms. Data from an independent sample of 77 adults with complicated-mild, moderate, or severe TBI supported the test-retest reliability of these newly developed measures. Conclusion The TBI-QOL Executive Function and Cognition-General Concerns item banks provide researchers and clinicians with reliable tools for assessing patient-reported post-TBI cognitive difficulties as part of the comprehensive TBI-QOL measurement system.

Objective To link scores on commonly used measures of anxiety (7-item Generalized Anxiety Disorder Scale; GAD-7) and depression (9-item Patient Health Questionnaire; PHQ-9) to the Traumatic Brain Injury Quality of Life (TBI-QOL) measurement system. Setting 5 Traumatic Brain Injury Model Systems. Participants A total of 385 individuals with traumatic brain injury (TBI) (31% complicated mild; 14% moderate; and 54% severe). Design Observational cohort. Main measures GAD-7, PHQ-9, TBI-QOL Anxiety v1.0 and TBI-QOL Depression v1.0. Results Item response theory-based linking methods were used to create crosswalk tables that convert scores on the GAD-7 to the TBI-QOL Anxiety metric and scores on the PHQ-9 to the TBI-QOL Depression metric. Comparisons between actual and crosswalked scores suggest that the linkages were successful and are appropriate for group-level analysis. Linking functions closely mirror crosswalks between the GAD-7/PHQ-9 and the Patient-Reported Outcomes Measurement Information System (PROMIS), suggesting that general population linkages are similar to those from a TBI sample. Conclusion Researchers and clinicians can use the crosswalk tables to transform scores on the GAD-7 and the PHQ-9 to the TBI-QOL metric for group-level analyses.

Objectives To describe the development and field testing of the patient-reported outcome measures of Mobility and Upper Extremity function from the Traumatic Brain Injury Quality of Life (TBI-QOL) measurement system, and to evaluate the use of computer adaptive testing. Setting Five rehabilitation facilities funded as part of the TBI Model Systems network. Participants Individuals with complicated mild, moderate, or severe traumatic brain injury (n = 590). Interventions Not available. Outcome measures TBI-QOL Mobility and Upper Extremity item banks. Results Item response theory and factor analyses supported the unidimensionality of the Mobility and Upper Extremity banks. Descriptive statistics showed a ceiling effect for both measures. Simulated computer adaptive tests (CATs) showed that measurement precision was maintained across administration formats for both measures. The Upper Extremity CAT showed a loss of precision for individuals without impairment and that a higher number of items were required to achieve sufficiently precise measurement, compared to the Mobility CAT. Conclusions The TBI-QOL Upper Extremity and Mobility item banks achieved good breadth of coverage, particularly among those individuals who have experienced some degree of functional limitation. The use of CAT administration minimizes respondent burden, while allowing for the comprehensive assessment of adults with TBI. The combined use of the TBI-QOL with performance-based measures could guide the development of targeted rehabilitation treatments.

Objective To develop a traumatic brain injury (TBI)-specific, item response theory (IRT)-calibrated Fatigue item bank, short form, and computer adaptive test (CAT) as part of the Traumatic Brain Injury-Quality of Life (TBI-QOL) measurement system. Setting Five TBI Model Systems rehabilitation centers in the US PARTICIPANTS:: Adults with complicated mild, moderate, or severe TBI confirmed by medical record review. Design Cross-sectional field testing via phone or in-person interview. Main measures TBI-QOL Fatigue item bank, short form, and CAT. Results A total of 590 adults with TBI completed 95 preliminary fatigue items, including 86 items from the Patient-Reported Outcomes Measurement Information System (PROMIS) and 9 items from the Quality of Life in Neurological Disorders (Neuro-QOL) system. Through 4 iterations of factor analysis, 22 items were deleted for reasons such as local item dependence, misfit, and low item-total correlations. Graded response model IRT analyses were conducted on the 73-item set, and Stocking-Lord equating was used to transform the item parameters to the PROMIS (general population) metric. A short form and CAT, which demonstrate similar reliability to the full item bank, were developed. Test-retest reliability of the CAT was established in an independent sample (Pearson's r and intraclass correlation coefficient = 0.82 [95% confidence interval: 0.72-0.88]). Conclusions The TBI-QOL Fatigue item bank, short form, and CAT provide rehabilitation researchers and clinicians with TBI-optimized tools for assessment of the patient-reported experience and impact of fatigue on individuals with TBI.

Objective To assess differential item functioning and observed mean differences across two modes of administration for PROMIS® measure scores in a sample of adults with traumatic injury. Method Items from 7 PROMIS® adult measures (v1.0 Physical Function, Fatigue, Pain Interference, Anger, Anxiety, and Depression and v2.0 Social Health-Emotional Support) were administered as fixed-length short forms in random order to a cross-sectional sample. Participants were randomly assigned to interviewer-administered (phone or in-person) or self-administered (via the Assessment Center website) conditions. The research was conducted at 5 medical rehabilitation institutions across the U.S. Participants included 277 adults with spinal cord injury (n = 148) or traumatic brain injury (n = 129). Results DIF analyses indicated that all items were invariant to mode of administration. There was no significant effect of mode of administration for the majority of PROMIS® measures tested. Regarding observed scores, there were small but significant effects of mode of administration on the Emotional Support and Depression measures, with participants in the interview condition reporting better support/fewer symptoms. Conclusions PROMIS® instruments demonstrated measurement equivalence across interviewer-administered and self-administered conditions. These findings are particularly important for research or clinical applications where administration of PROMIS® measures by independent web- or tablet-based administration is not ideal, for example with individuals with physical or cognitive disabilities or with individuals who lack computer and/or Internet access. PROMIS® v1.0 Depression and PROMIS® v2.0 Emotional Support scores displayed a tendency toward social desirability that should be considered when these measures are interviewer-administered. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Purpose The purpose of this study was to evaluate the internal consistency and construct validity of the Traumatic Brain Injury Quality of Life Communication Item Bank (TBI-QOL COM) short form as a parent-proxy report measure. The TBI-QOL COM is a patient-reported outcome measure of functional communication originally developed as a self-report measure for adults with traumatic brain injury (TBI), but it may also be valid as a parent-proxy report measure for children who have sustained TBI. Method One hundred twenty-nine parent-proxy raters completed the TBI-QOL COM short form 6 months postinjury as a secondary aim of a multisite study of pediatric TBI outcomes. The respondents' children with TBI were between 8 and 18 years old ( M age = 13.2 years old) at the time of injury, and the proportion of TBI severity mirrored national trends (73% complicated–mild; 27% moderate or severe). Results The parent-proxy report version of the TBI-QOL COM displayed strong internal consistency (ordinal α = .93). It also displayed evidence of known-groups validity by virtue of more severe injuries associated with more abnormal scores. The instrument also showed evidence of convergent and discriminant validity by displaying a pattern of correlations with other constructs according to their conceptual relatedness to functional communication. Conclusions This preliminary psychometric investigation of the TBI-QOL COM supports the further development of a parent report version of the instrument. Future development of the TBI-QOL COM with this population may include expanding the content of the item bank and developing calibrations specifically for parent-proxy raters. Supplemental Material https://doi.org/10.23641/asha.7616534

Objective To develop a pain interference item bank, computer adaptive test (CAT), and short form for use by individuals with traumatic brain injury (TBI). Design Cross-sectional survey study. Setting Five TBI Model Systems rehabilitation hospitals. Participants Individuals with TBI (N=590). Interventions Not applicable. Outcome Measures Traumatic Brain Injury–Quality of Life (TBI-QOL) Pain Interference item bank. Results Confirmatory factor analysis provided evidence of a single underlying trait (χ2 [740]=3254.030; P Conclusion The 40-item TBI-QOL Pain Interference item bank demonstrated strong psychometric properties. End users can administer this measure as either a 10-item short form or CAT.

PURPOSE: Having independent versions of the PROMIS® scales (for Pediatric and Adults) is problematic as scores can’t be evaluated longitudinally as individuals move from childhood into adulthood. The primary aim of this research project is to use item response theory (IRT) to develop a transitional scoring link (or “crosswalk”) between the PROMIS adult and pediatric physical health measures. SETTING: Sample 1 was collected at 6 rehabilitation hospitals in the U.S., and participants in Sample 2 were recruited from public health insurance programs and an online research panel. METHODS: PROMIS pediatric and adult physical function, mobility, upper extremity, fatigue, and pain measures were administered to a sample of 874 individuals aged 14–20 years old with special health needs and a sample of 641 individuals aged 14–25 years with a disability. IRT-based scores were linked using a linear approximation to calibrated projection. RESULTS: Estimated latent variable correlations ranged between .84 and .95 for the PROMIS pediatric and adult scores. Root expected mean square difference values were below the .08 threshold in all cases except when comparing genders on the Mobility (.097) and Pain (.10) scales in the special health care needs sample. Sum score conversion tables for the pediatric and adult PROMIS measures are presented. CONCLUSIONS: The linking coefficients can be used to calculate scale scores on PROMIS adult measures from pediatric measure scores and vice-versa. This may lead to more accurate measurement in cross-sectional studies spanning multiple age groups or longitudinal studies that require comparable measurement across distinct developmental stages.

Supplemental Digital Content is Available in the Text., 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.

Research studies that measure health-related quality of life (HRQOL) in both children and adults and longitudinal studies that follow children into adulthood need measures that can be compared across these age groups. This study links the PROMIS pediatric and adult emotional distress measures using data from participants with diverse health conditions and disabilities. Analyses were conducted and compared in two separate samples to confirm the stability of results. One sample (n = 874) included individuals aged 14–20 years with special health care needs and who require health services. The other sample (n = 641) included individuals aged 14–25 years who have a physical or cognitive disability. Participants completed both PROMIS pediatric and adult measures. Item response theory-based scores were linked using the linear approximation to calibrated projection. The estimated latent-variable correlation between pediatric and adult PROMIS measures ranged from 0.87 to 0.94. Regression coefficients β 0 (intercept) and β 1 (slope), and mean squared error are provided to transform scores from the pediatric to the adult measures, and vice versa. This study used a relatively new linking method, calibrated projection, to link PROMIS pediatric and adult measure scores, thus expanding the use of PROMIS measures to research that includes both populations.

Objectives To develop functional ability levels for the Spinal Cord Injury Functional Index (SCI-FI) and to validate them using calibration and reliability samples. Design Three-phase strategy involved (1) performing quantitative synthesis of SCI-FI data to create item maps; (2) using a panel of experts to identify functional ability levels after the bookmarking and Delphi consensus-building process; and (3) performing quantitative analyses to examine demographic characteristics across 2 samples, assessing the distribution pattern across functional ability levels, and examining concurrent validity using the self-reported functional measure and the observer-rated FIM. Setting Inpatient and community settings. Participants People 18 years or older with traumatic spinal cord injury (N=1124) were recruited from the Spinal Cord Injury Model Systems programs and stratified by diagnosis, severity, and time since injury (n=855 and n=269 for calibration and reliability samples, respectively). Interventions Not applicable. Main Outcome Measure SCI-FI. Results Five functional ability levels were identified for all SCI-FI domains, except fine motor having 4 functional ability levels. Statistical test results indicated no significant differences in the distribution pattern across the 2 samples across functional ability levels for all domains except for ambulation. Known-group comparisons were able to discern the spinal cord injury population as expected. Basic mobility, self-care, and wheelchair mobility domains had a cluster of persons with paraplegia and incomplete lesions at higher functional ability levels and persons with tetraplegia and complete lesions at lower functional ability levels. For the ambulation domain, the distribution was skewed to the lower end, with a relatively small percentage of persons with incomplete lesions (paraplegia and tetraplegia) at higher functional ability levels. For the fine motor domain, the distribution was skewed to higher functional ability levels, with a high percentage of persons with paraplegia at the highest level (complete and incomplete lesions). Concurrent validity analyses revealed SCI-FI functional levels to be significantly ( P Conclusions Clinicians can use functional ability levels to discuss patients' functional capabilities with them and their family.

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 Language: en

Objective To 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. Design Using 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. Setting Thirty-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. Participants Seven hundred fifty-seven adults with traumatic SCI. Results The 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. Conclusion The 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.

Objective To describe the development and psychometric properties of the Spinal Cord Injury - Quality of Life (SCI-QOL) Resilience item bank and short form. Design Using a mixed-methods design, we developed and tested a resilience item bank through the use of focus groups with individuals with SCI and clinicians with expertise in SCI, cognitive interviews, and item-response theory based analytic approaches, including tests of model fit and differential item functioning (DIF). Setting We tested a 32-item pool at several medical institutions across the United States, including the University of Michigan, Kessler Foundation, the Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital and the James J. Peters/Bronx Department of Veterans Affairs medical center. Participants A total of 717 individuals with SCI completed the Resilience items. Results A unidimensional model was observed (CFI = 0.968; RMSEA = 0.074) and measurement precision was good (theta range between −3.1 and 0.9). Ten items were flagged for DIF, however, after examination of effect sizes we found this to be negligible with little practical impact on score estimates. The final calibrated item bank resulted in 21 retained items. Conclusion This study indicates that the SCI-QOL Resilience item bank represents a psychometrically robust measurement tool. Short form items are also suggested and computer adaptive tests are available.

Though spinal cord injury (SCI) was historically regarded as an ailment not to betreated, 1 medical, pharmaceutical, and technological advances in the 20th and 21st centuries have improved acute and long-term SCI rehabilitation outcomes. Consequently, SCI has become an increasingly common cause of long-term disability, with over 250 000 Americans 2,3 and over 85 000 Canadians 4 living with SCI. Traumatic SCI is a catastrophic injury that changes the lives of individuals in a split second. SCI is characterized by a broad and unique set of functional limitations and secondary complications that affect physical (e.g. altered urinary and bowel function, 5–7 pressure ulcers, 8,9 chronic and neuropathic pain) cognitive, 10,11 emotional (e.g. depression, 12,13 anxiety disorders), 14 and social (e.g. unemployment) 15 areas of health and functioning. Individuals who sustain SCI must adjust immediately to a new way of life that is often characterized by significant physical limitations, alterations to basic physiological functions, intense emotions, disruption of social relationships, and barriers to participating in their usual activities – essentially, every possible area of health-related quality of life (HRQOL). Individuals with SCI have described the secondary complications of SCI to be equally or even more troublesome than the primary functional limitationsofSCI,suchastheinabilitytowalk. 16 Furthermore

Objective To develop a spinal cord injury (SCI)-focused version of PROMIS and Neuro-QOL social domain item banks; evaluate the psychometric properties of items developed for adults with SCI; and report information to facilitate clinical and research use. Design We used a mixed-methods design to develop and evaluate Ability to Participate in Social Roles and Activities and Satisfaction with Social Roles and Activities items. Focus groups helped define the constructs; cognitive interviews helped revise items; and confirmatory factor analysis and item response theory methods helped calibrate item banks and evaluate differential item functioning related to demographic and injury characteristics. Setting Five SCI Model System sites and one Veterans Administration medical center. Participants The calibration sample consisted of 641 individuals; a reliability sample consisted of 245 individuals residing in the community. Results A subset of 27 Ability to Participate and 35 Satisfaction items demonstrated good measurement properties and negligible differential item functioning related to demographic and injury characteristics. The SCI-specific measures correlate strongly with the PROMIS and Neuro-QOL versions. Ten item short forms correlate >0.96 with the full banks. Variable-length CATs with a minimum of 4 items, variable-length CATs with a minimum of 8 items, fixed-length CATs of 10 items, and the 10-item short forms demonstrate construct coverage and measurement error that is comparable to the full item bank. Conclusion The Ability to Participate and Satisfaction with Social Roles and Activities CATs and short forms demonstrate excellent psychometric properties and are suitable for clinical and research applications.

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.

Objective To 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. Design A 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). Setting We 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. Participants A total of 717 individuals with SCI answered the grief and loss questions. Results The 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. Conclusions This 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.

Objectives: To describe the domain structure and calibration of the Spinal Cord Injury Functional Index for samples using Assistive Technology (SCI-FI/AT) and report the initial psychometric properties of each domain. Design: Cross sectional survey followed by computerized adaptive test (CAT) simulations. Setting: Inpatient and community settings. Participants: A sample of 460 adults with traumatic spinal cord injury (SCI) stratified by level of injury, completeness of injury, and time since injury. Interventions: None Main outcome measure: SCI-FI/AT Results: Confirmatory factor analysis (CFA) and Item response theory (IRT) analyses identified 4 unidimensional SCI-FI/AT domains: Basic Mobility (41 items) Self-care (71 items), Fine Motor Function (35 items), and Ambulation (29 items). High correlations of full item banks with 10-item simulated CATs indicated high accuracy of each CAT in estimating a person’s function, and there was high measurement reliability for the simulated CAT scales compared with the full item bank. SCI-FI/AT item difficulties in the domains of Self-care, Fine Motor Function, and Ambulation were less difficult than the same items in the original SCI-FI item banks. Conclusion: With the development of the SCI-FI/AT, clinicians and investigators have available multidimensional assessment scales that evaluate function for users of AT to complement the scales available in the original SCI-FI.

Objective To develop and evaluate the psychometric properties of an item set measuring economic quality of life (QOL) for use by individuals with disabilities. Design Survey. Setting Community settings. Participants Individuals with disabilities completed individual interviews (n=64), participated in focus groups (n=172), and completed cognitive interviews (n=15). Inclusion criteria included the following: traumatic brain injury, spinal cord injury, or stroke; age ≥18 years; and ability to read and speak English. We calibrated the items with 305 former rehabilitation inpatients. Interventions None. Main Outcome Measure Economic QOL. Results Confirmatory factor analysis showed acceptable fit indices (comparative fit index=.939, root mean square error of approximation=.089) for the 37 items. However, 3 items demonstrated local item dependence. Dropping 9 items improved fit and obviated local dependence. Rasch analysis of the remaining 28 items yielded a person reliability of .92, suggesting that these items discriminate about 4 economic QOL levels. Conclusions We developed a 28-item bank that measures economic aspects of QOL. Preliminary confirmatory factor analysis and Rasch analysis results support the psychometric properties of this new measure. It fills a gap in health-related QOL measurement by describing the economic barriers and facilitators of community participation. Future development will make the item bank available as a computer adaptive test.

Objective To describe the development and psychometric properties of the Spinal Cord Injury-Quality of Life (SCI-QOL) Self-esteem item bank. Design Using a mixed-methods design, we developed and tested a self-esteem item bank through the use of focus groups with individuals with SCI and clinicians with expertise in SCI, cognitive interviews, and item-response theory- (IRT) based analytic approaches, including tests of model fit, differential item functioning (DIF) and precision. Setting We tested a pool of 30 items at several medical institutions across the United States, including the University of Michigan, Kessler Foundation, the Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital, and the James J. Peters/Bronx Department of Veterans Affairs hospital. Participants A total of 717 individuals with SCI completed the self-esteem items. Results A unidimensional model was observed (CFI = 0.946; RMSEA = 0.087) and measurement precision was good (theta range between −2.7 and 0.7). Eleven items were flagged for DIF; however, effect sizes were negligible with little practical impact on score estimates. The final calibrated item bank resulted in 23 retained items. Conclusion This study indicates that the SCI-QOL Self-esteem item bank represents a psychometrically robust measurement tool. Short form items are also suggested and computer adaptive tests are available.

Objective To 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. Design Grounded-theory based qualitative item development methods, large-scale item calibration testing, confirmatory factor analysis (CFA), and item response theory-based psychometric analysis. 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 Pressure Ulcers scale. Results 189 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. Conclusions The 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.

Objective To develop an item response theory (IRT)-calibrated spinal cord injury (SCI)-specific Positive Affect and Well-being (PAWB) item bank with flexible options for administration. Design Qualitative feedback from patient and provider focus groups was used to expand on the Neurological Disorders and Quality of Life (Neuro-QOL) positive affect & well-being item bank for use in SCI. New items were created and revised based on expert review and patient feedback and were then field tested. Analyses included confirmatory factor analysis, graded response IRT modeling and evaluation of differential item functioning (DIF). Setting We tested a 32-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. Participants A total of 717 individuals with SCI answered the PAWB questions. Results A unidimensional model was observed (Confirmatory Fit Index = 0.947; Root Mean Square Error of Approximation = 0.094) and measurement precision was good (reliability in theta of –2.9 to 1.2 is roughly equivalent to classical reliability of 0.95 or above). Twelve items were flagged for DIF, however, after examination of effect sizes, the DIF was determined to be negligible and would have little practical impact on score estimates. The final calibrated item bank resulted in 28 retained items Conclusions This study indicates that the Spinal Cord Injury – Quality of Life PAWB bank represents a psychometrically robust measurement tool. Short form items are also suggested and a computer adaptive test is available.

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.

Objective To examine the ability of the Spinal Cord Injury-Functional Index/Assistive Technology (SCI-FI/AT) measure to detect change in persons with spinal cord injury (SCI). Design Multisite longitudinal (12-mo follow-up) study. Setting Nine SCI Model Systems programs. Participants Adults (N=165) with SCI enrolled in the SCI Model Systems database. Interventions Not applicable. Main Outcome Measures SCI-FI/AT computerized adaptive test (CAT) (Basic Mobility, Self-Care, Fine Motor Function, Wheelchair Mobility, and/or Ambulation domains) completed at discharge from rehabilitation and 12 months after SCI. For each domain, effect size estimates and 95% confidence intervals were calculated for subgroups with paraplegia and tetraplegia. Results The demographic characteristics of the sample were as follows: 46% (n=76) individuals with paraplegia, 76% (n=125) male participants, 57% (n=94) used a manual wheelchair, 38% (n=63) used a power wheelchair, 30% (n=50) were ambulatory. For individuals with paraplegia, the Basic Mobility, Self-Care, and Ambulation domains of the SCI-FI/AT detected a significantly large amount of change; in contrast, the Fine Motor Function and Wheelchair Mobility domains detected only a small amount of change. For those with tetraplegia, the Basic Mobility, Fine Motor Function, and Self-Care domains detected a small amount of change whereas the Ambulation item domain detected a medium amount of change. The Wheelchair Mobility domain for people with tetraplegia was the only SCI-FI/AT domain that did not detect significant change. Conclusions SCI-FI/AT CAT item banks detected an increase in function from discharge to 12 months after SCI. The effect size estimates for the SCI-FI/AT CAT vary by domain and level of lesion. Findings support the use of the SCI-FI/AT CAT in the population with SCI and highlight the importance of multidimensional functional measures.

Objective To assess the responsiveness of the Traumatic Brain Injury–Quality of Life (TBI-QOL) measurement system. Design Participants completed the 20 TBI-QOL item banks and the Participation Assessment with Recombined Tools–Objective (PART-O) Productivity Subscale at baseline and 6-month follow-up assessments. Participants were categorized into 4 groups (increased productivity, unchanged productivity, and decreased productivity) based on PART-O Productivity scores. Paired sample t tests were used to compare TBI-QOL scores at baseline and 6 months, and standardized response means and Cohen's d were computed to estimate effect sizes. Setting Three traumatic brain injury (TBI) Model Systems rehabilitation centers in the United States. Participants Two hundred one community-dwelling adults with TBI. Interventions Not applicable. Main Outcome Measures 20 TBI-QOL item banks. Results As expected, given that there was no intervention, group mean TBI-QOL subdomain scores for the entire sample showed no change or small improvement over the 6-month study period. At the follow-up assessment, 72 participants reported increased productivity, 71 reported decreased productivity, and 58 reported the same level of productivity as they had 6 months prior. When compared with participants who reported unchanged or decreased productivity, participants who reported increased productivity on the PART-O subscale had clinically meaningful ( d ≥0.30) improvements on 7 TBI-QOL measures. The largest improvement was in the Independence subdomain (mean change, 7.06; df =0.84), with differences also observed in the Mobility, Positive Affect and Well-Being, Resilience, Grief/Loss, Ability to Participate, and Satisfaction with Participation subdomains. Conclusions The 20 TBI-QOL item banks demonstrate responsiveness to change and measurement stability in a community-dwelling sample. Researchers may use the TBI-QOL to detect changes in HRQOL after a clinical intervention and clinicians may use it in their daily practices to monitor patient recovery.

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. (JINS, 2014,20, 1–12)

Objective To determine the factor structure of the Traumatic Brain Injury–Quality of Life (TBI-QOL) measurement system. Design Observational. Setting 3 TBI Model Systems rehabilitation centers. Participants Twenty TBI-QOL item banks were administered to a sample of community-dwelling adults with TBI (N=504) as part of a study of TBI classification. A subsample of participants (n=200) was randomly selected for exploratory factor analyses, while data from the remaining participants (n=304) were used for the confirmatory factor analysis. To examine a wide range of conceptual models, confirmatory factor analyses were conducted on a total of 16 models, ranging from 1 to 7 factors. Interventions Not applicable. Main Outcome Measures Not applicable. Results Initial exploratory factor analysis yielded support for a 5-factor model (negative emotion, cognitive impairment, functioning and participation, positive emotion, pain). Confirmatory factor analysis results, however, indicated a 7-factor model including physical function, physical symptoms, cognition, negative emotion, positive emotion, sense of self, and social participation (model 16; robust fit statistics root mean square error of approximation=.063, standardized root mean square residual=.035, comparative fit index=.955, Tucker-Lewis Index=.943, Bayes Information Criterion=40059.44). Conclusions The complex 7-factor model of the TBI-QOL provides a more nuanced framework for understanding health-related quality of life for persons with TBI than the commonly used 3-factor model including physical health, mental health, and social health.

To provide validation of functional ability levels for the Spinal Cord Injury - Functional Index (SCI-FI).Cross-sectional.Inpatient rehabilitation hospital and community settings.A sample of 855 individuals with traumatic spinal cord injury enrolled in 6 rehabilitation centers participating in the National Spinal Cord Injury Model Systems Network.Not Applicable.Spinal Cord Injury-Functional Index (SCI-FI).Cluster analyses identified three distinct groups that represent low, mid-range and high SCI-FI functional ability levels. Comparison of clusters on personal and other injury characteristics suggested some significant differences between groups.These results strongly support the use of SCI-FI functional ability levels to document the perceived functional abilities of persons with SCI. Results of the cluster analysis suggest that the SCI-FI functional ability levels capture function by injury characteristics. Clinical implications regarding tracking functional activity trajectories during follow-up visits are discussed.

Jette AM, Tulsky DS, Ni P, Kisala PA, Slavin MD, Dijkers MP, Heinemann AW, Tate DG, Whiteneck G, Charlifue S, Houlihan B, Williams S, Kirshblum S, Dyson-Hudson T, Zanca J, Fyffe D. 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.

OBJECTIVE: To (1) identify groups of persons with traumatic brain injury (TBI) who differ on 12 dimensions of cognitive function: cognitive, emotional, and physical symptoms; personal strengths; physical functioning; environmental supports; and performance validity; and (2) describe patterns of differences among the groups on these dimensions and on participation outcome. SETTING: Three centers for rehabilitation of persons with TBI. PARTICIPANTS: A total of 504 persons with TBI living in the community who were an average (standard deviation) of 6.3 (6.8) years postinjury and who had capacity to give consent, could be interviewed and tested in English, and were able to participate in an assessment lasting up to 4 hours. DESIGN: Observational study of a convenience sample of persons with TBI. MAIN MEASURES: Selected scales from the Traumatic Brain Injury Quality of Life measures, Neurobehavioral Symptom Inventory, Economic Quality of Life Scale, Family Assessment Device General Functioning Scale, measures of cognitive function, Word Memory Test, and Participation Assessment with Recombined Tools-Objective (PART-O) scale. RESULTS: Cluster analysis identified 5 groups of persons with TBI who differed in clinically meaningful ways on the 12 dimension scores and the PART-O scale. CONCLUSION: Cluster groupings identified in this study could assist clinicians with case conceptualization and treatment planning. Language: en