Exploring symptom clusters in mild cognitive impairment and dementia with the NIH Toolbox.

OBJECTIVE: Symptom clustering research provides a unique opportunity for understanding complex medical conditions. The objective of this study was to apply a variable-centered analytic approach to understand how symptoms may cluster together, within and across domains of functioning in mild cognitive impairment (MCI) and dementia, to better understand these conditions and potential etiological, prevention, and intervention considerations. METHOD: Cognitive, motor, sensory, emotional, and social measures from the NIH Toolbox were analyzed using exploratory factor analysis (EFA) from a dataset of 165 individuals with a research diagnosis of either amnestic MCI or dementia of the Alzheimer's type. RESULTS: The six-factor EFA solution described here primarily replicated the intended structure of the NIH Toolbox with a few deviations, notably sensory and motor scores loading onto factors with measures of cognition, emotional, and social health. These findings suggest the presence of cross-domain symptom clusters in these populations. In particular, negative affect, stress, loneliness, and pain formed one unique symptom cluster that bridged the NIH Toolbox domains of physical, social, and emotional health. Olfaction and dexterity formed a second unique cluster with measures of executive functioning, working memory, episodic memory, and processing speed. A third novel cluster was detected for mobility, strength, and vision, which was considered to reflect a physical functioning factor. Somewhat unexpectedly, the hearing test included did not load strongly onto any factor. CONCLUSION: This research presents a preliminary effort to detect symptom clusters in amnestic MCI and dementia using an existing dataset of outcome measures from the NIH Toolbox.

Cross-replicating findings on unique motor impairments of children with ASD using confirmatory factor analysis and a novel SPARK study sample.

A series of recent reports have shed light on the pervasive nature of motor impairments in children with ASD (Bhat, 2020, 2021, Bhat et al., 2022), underscoring the importance of providing ASD clinicians efficient and accurate tools for motor screening. The Developmental Coordination Disorder-Questionnaire (DCD-Q) is a widely used motor screening tool, yet scant evidence exists regarding its psychometric properties in children with ASD. In a recent Exploratory Factor Analysis (EFA) of the 15-item DCD-Q in a large sample of children with ASD (SPARK study), we found a 5-factor latent structure that identified unique motor impairments in a large sample of children with ASD (Bhat et al., 2022). In the current study, we extend this work by cross-replicating the EFA findings of unique ASD-related motor issues using Confirmatory Factor Analysis (CFA) in a new, more recent wave of children with ASD from the SPARK study (N = 9721). The fits and interpretability of 11 hypothesis-driven CFA models, including 8 correlated-factors, 1 second-order, and 2 bifactor models were compared. Our findings supported the previous 5-factor model with 2 gross motor subdomains, 1 fine motor domain (similar to the original DCD-Q) and 2 general coordination subdomains. This model demonstrated acceptable fit in the new sample as well as superior fit compared to several other parsimonious correlated-factors models. However, the second-order and bifactor models fit slightly better and supported the presence of a general motor skills factor, although 38% of the common variance in the DCD-Q items remained attributable to the 5 subdomains. Using one of the bifactor models, measurement invariance was also supported for DCD-Q across sex, race, and co-occurring conditions of language disorder and intellectual disability. Only partial invariance was supported when testing DCD-Q scores across different age groups. These findings reveal a more complex dimensional picture of the DCD-Q in children with ASD. Results suggest that the DCD-Q can be used in two ways, total scores adequately assess general motor skills for brief screening and subdomain scores offer unique information on the multidimensional motor problems of children with ASD. If subdomain data are of interest, our findings call into question the practice of relying on 3 original subscales of the DCD-Q when screening for ASD-related motor difficulties, whereas 4 out of 5 subscale scores may better highlight domain-specific motor problems. Future studies should continue to further validate DCD-Q's ability to screen for multidimensional motor problems.

A further study of relations between motor impairment and social communication, cognitive, language, functional impairments, and repetitive behavior severity in children with ASD using the SPARK study dataset.

Motor impairments are pervasive and persistent in children with autism spectrum disorder (ASD) throughout childhood and adolescence. Based on recent studies examining motor impairments in children with ASD between 5 and 15 years (i.e., SPARK study sample), 87-88% of this population is at-risk for a motor impairment, these problems persisted until 15 years, and related to their core (social communication skills and repetitive behaviors [RBs]) and comorbid (language, cognitive, and functional) impairments. Persistent motor impairments extending into adolescence/adulthood could negatively impact their independent daily living skills, physical fitness/activity levels, and physical/mental health. While multiple studies have examined relations between motor dimensions and core/comorbid impairments in young children with ASD, few studies have examined such relations in school-age children/adolescents with ASD. This paper conducts a further multidimensional study of which motor domains (i.e., gross-motor including visuo-motor or multilimb coordination/planning, fine motor [FM] or general coordination [GC] skills) best distinguish subgroups of school-age children/adolescents with ASD and help predict core and comorbid impairments after accounting for age and sex. Visuomotor, FM and certain GC skills were better at explaining variations in/predicting social communication impairments whereas FM skills were slightly better at explaining variations in/predicting RB severity. Multilimb coordination/planning and FM skills explained variations in/predicted cognitive delays whereas visuomotor and FM skills explained variations in and better predicted language delays. All three motor dimensions explained variations in/predicted functional delays. This study provides further evidence for inclusion of motor impairments within the ASD definition (criteria or specifiers). LAY SUMMARY: Gross-motor skills were related to social communication and functional delays of children with ASD (visuomotor skills related to language delays and multilimb coordination/planning skills related to cognitive delays). Fine-motor skills were related to repetitive behavior severity, language, cognitive, and functional delays in ASD. Diagnosticians should recommend systematic motor screening, further evaluations, and treatments for children at-risk for and diagnosed with ASD. Motor advocacy and enhanced public/clinical community awareness is needed to fulfill the unmet motor needs of children with ASD.

Responsiveness of the Traumatic Brain Injury Quality of Life Cognition Banks in Recent Brain Injury.

Patient report of functioning is one component of the neurocognitive exam following traumatic brain injury, and standardized patient-reported outcomes measures are useful to track outcomes during rehabilitation. The Traumatic Brain Injury Quality of Life measurement system (TBI-QOL) is a TBI-specific extension of the PROMIS and Neuro-QoL measurement systems that includes 20 item banks across physical, emotional, social, and cognitive domains. Previous research has evaluated the responsiveness of the TBI-QOL measures in community-dwelling individuals and found clinically important change over a 6-month assessment interval in a sample of individuals who were on average 5 years post-injury. In the present study, we report on the responsiveness of the TBI-QOL Cognition-General Concerns and Executive Function item bank scores and the Cognitive Health Composite scores in a recently injured sample over a 1-year study period. Data from 128 participants with complicated mild, moderate, or severe TBI within the previous 6 months were evaluated. The majority of the sample was male, white, and non-Hispanic. The participants were 18-92 years of age and were first evaluated from 0 to 5 months post-injury. Eighty participants completed the 1-year follow-up assessment. Results show acceptable standard response mean values (0.47-0.51) for all measures and minimal detectable change values ranging from 8.2 to 8.8 T-score points for Cognition-General Concerns and Executive Functioning measures. Anchor rating analysis revealed that changes in scores on the Executive Function item bank and the Cognitive Health Composite were meaningfully associated with participant-reported changes in the areas of attention, multitasking, and memory. Evaluation of change score differences by a variety of clinical indicators demonstrated a small but significant difference in the three TBI-QOL change scores by TBI injury severity grouping. These results support the responsiveness of the TBI-QOL cognition measures in newly injured individuals and provides information on the minimal important differences for the TBI-QOL cognition measures, which can be used for score interpretation by clinicians and researchers seeking patient-reported outcome measures of self-reported cognitive QOL after TBI.

Measurement invariance of physical, mental, and social health PROMIS measures across individuals with spinal cord injury and traumatic brain injury.

PURPOSE: The present study tested the fit and comparability of the tripartite model of health (Physical Health, Mental Health, and Social Health) proposed by the NIH PROMIS for adults with SCI and TBI. METHODS: Participants were 630 adults with spinal cord injury (SCI; n = 336) and traumatic brain injury (TBI; n = 294) who completed 8 PROMIS short forms. The Physical Health domain is composed of the Physical Function, Pain Interference, and Fatigue scales. The Mental Health domain included the Depression, Anxiety, and Anger scales. Social Health included the Social Emotional Support scale. RESULTS: Confirmatory factor analyses supported the tripartite model of health over a unifactorial model of health for both SCI and TBI groups. Measurement invariance testing indicated the tripartite model met the level of configural and metric invariance for TBI and SCI groups, suggesting comparable structure and factor loadings. Failure to meet the level of scalar invariance indicated unequal intercepts across groups. Physical Function was identified as the source of noninvariance, and a partial scalar invariance model permitting different Physical Function intercepts across conditions was supported. CONCLUSION: Consistent with theory, findings supported construct validity of the PROMIS tripartite structure of health composed of Physical, Mental, and Social Health. PROMIS measures appeared to tap domains of health consistent with what is accepted for SCI and TBI populations, although the measurement of Physical Function was not equivalent across groups. Findings support the utility of PROMIS broadly as well as the need for condition-optimized measurement.

Creating Crosswalks for Knee Outcomes After ACL Reconstruction Between the KOOS and the IKDC-SKF.

BACKGROUND: Anterior cruciate ligament (ACL) registries do not all use the same patient-reported outcome measures, limiting comparisons and preventing pooling of data for meta-analysis. Our objective was to create a statistical crosswalk to convert cohort and registry mean Knee Injury and Osteoarthritis Outcome Scores (KOOS) to International Knee Documentation Committee-Subjective Knee Form (IKDC-SKF) scores and vice versa to allow these comparisons. METHODS: Data from 3 ACL registries were pooled (n = 14,412) and were separated into a training data set (70% of the sample) or a validation data set (30% of the sample). The KOOS and the IKDC-SKF scores were available prior to the operation and at 1, 2, and 5 or 6 years postoperatively. We used equipercentile equating methods to create crosswalks in the training data set and examined accuracy in the validation data set as well as bootstrapping analyses to assess the impact of sample size on accuracy. RESULTS: Preliminary analyses suggested that crosswalks could be attempted: large correlations between scores on the 2 measures (r = 0.84 to 0.94), unidimensionality of scores, and subpopulation invariance were deemed sufficient. When comparing actual scores with crosswalked scores in the validation data set, negligible bias was observed at the group level; however, individual score deviations were variable. The crosswalks are successful for the group level only. CONCLUSIONS: Our crosswalks successfully convert between the KOOS and the IKDC-SKF scores to allow for a group-level comparison of registry and other cohort data. CLINICAL RELEVANCE: These crosswalks allow comparisons among different national ligament registries as well as other research cohorts and studies; they also allow data from different patient-reported outcome measures to be pooled for meta-analysis. These crosswalks have great potential to improve our understanding of recovery after ACL reconstruction and aid in our ongoing efforts to improve outcomes and patient satisfaction, as well as to allow the continued analysis of historical data.

Linking the Spinal Cord Injury-Functional Index (SCI-FI) to the PROMIS Physical Functioning Item Bank.

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).

Physical Function Recovery Trajectories After Spinal Cord Injury.

OBJECTIVE: To explore trajectories of functional recovery that occur during the first 2 years after spinal cord injury (SCI). DESIGN: Observational cohort study. SETTING: Eight SCI Model System sites. PARTICIPANTS: A total of 479 adults with SCI completed 4 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 after baseline assessment (N=479). 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 6 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 6 months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed 2 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 regarding rates of recovery. CONCLUSIONS: Trajectories of functional recovery followed a small number of change patterns, although variation around these patterns emerged. During the first 2 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 2 years and beyond.

Spinal Cord Injury-Functional Index/Capacity: Responsiveness to Change Over Time.

OBJECTIVE: To establish responsiveness of 3 Spinal Cord Injury-Functional Index/Capacity (SCI-FI/C) item banks in the first year after spinal cord injury (SCI). DESIGN: Longitudinal patient-reported outcomes assessment replicated through secondary analysis of an independent data set. SETTING: A total of 8 SCI Model Systems rehabilitation hospitals in the United States. PARTICIPANTS: Study 1 participants included 184 adults with recent (≤4 months) traumatic SCI and 221 community-dwelling adults (>1 year post injury) (N=405). Study 2 participants were 418 individuals with recent SCI (≤4 months) (N=418). 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) because 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 sample with recent SCI 1 year after baseline measurement. Study 2 also compared the SCI-FI/C measures' responsiveness to that of the Self-reported 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-reported 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<.01) for recently injured individuals. SCI-FI Basic Mobility/C, Self-care/C, and Fine Motor/C item banks demonstrated small to medium effect sizes in the recently injured sample. In the community-dwelling sample, all SCI-FI/C effects were negligible (ie, effect size<0.08). Study 2 results were similar to study 1. As expected, SCI-FI Basic Mobility/C and Self-care/C were responsive to change for all individuals in study 2, whereas the SCI-FI Fine Motor/C was responsive only for individuals with tetraplegia and incomplete paraplegia. The SRFM demonstrated a medium effect size for responsiveness (effect size=0.65). CONCLUSIONS: 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.

Clinical Use of PROMIS, Neuro-QoL, TBI-QoL, and Other Patient-Reported Outcome Measures for Individual Adult Clients with Cognitive and Language Disorders.

Patient-reported outcome measures (PROMs) assess health outcomes from the patient's perspective. The National Institutes of Health has invested in the creation of numerous PROMs that comprise the PROMIS, Neuro-QoL, and TBI-QoL measurement systems. Some of these PROMs are potentially useful as primary or secondary outcome measures, or as contextual variables for the treatment of adults with cognitive/language disorders. These PROMs were primarily created for clinical research and interpretation of group means. They also have potential for use with individual clients; however, at present there is only sparse evidence and direction for this application of PROMs. Previous research by Cohen and Hula (2020) described how PROMs could support evidence-based practices in speech-language pathology. This companion article extends upon that work to present clinicians with implementation information about obtaining, administering, scoring, and interpreting PROMs for individual clients with cognitive/language disorders. This includes considerations of the type and extent of communication support that is appropriate, implications of the relatively large measurement error that accompanies individual scores and pairs of scores, and recommendations for applying minimal detectable change values depending on the clinician's desired level of measurement precision. However, more research is needed to guide the interpretation of PROM scores for an individual client.

Psycholinguistic features, design attributes, and respondent-reported cognition predict response time to patient-reported outcome measure items.

PURPOSE: Patient-reported outcome measures (PROMs) vary in their psycholinguistic complexity. This study examined whether response time to PROM items is related to psycholinguistic attributes of the item and/or the self-reported cognitive ability of the respondent. METHODS: Baseline data from Wave 2 of the Quality of Life in Neurological Disorders (Neuro-QoL) development study were reanalyzed. That sample contained 581 adults with neurological disorders and whose self-reported cognitive abilities were quantified by the Neuro-QoL v2.0 Cognitive Function Item Bank. 185 Neuro-QoL items were coded for several psycholinguistic variables and design attributes: number of words and syllables, mean imageability of words, mean word frequency, mean age of word acquisition, and response format (e.g., about symptom frequency or task difficulty). Data were analyzed with linear and generalized linear mixed models. RESULTS: Main effects models revealed that slower response times were associated with respondents with lower self-reported cognitive abilities and with PROM items that contained more syllables, less imageable (e.g., more abstract) words, and that asked about task difficulty rather than symptom frequency. Interaction effects were found between self-reported cognition and those same PROM attributes such that people with worse self-reported cognitive abilities were disproportionately slow when responding to items that were longer (more syllables), contained less imageable words, and asked about task difficulty. CONCLUSION: Completing a PROM requires multiple cognitive skills (e.g., memory, executive functioning) and appraisal processes. Response time is a means of operationalizing the amount or difficulty of cognitive processing, and this report indicates several aspects of PROM design that relate to a measure's cognitive burden. However, future research with better experimental control is needed.

The Psychometric Properties of the Prioritizing Positivity Scale.

The tendency to use pleasant states as a key criterion for how to structure daily life is called prioritizing positivity and has been measured with a 6-item scale. The Prioritizing Positivity Scale (PPS) is increasingly being used by researchers, but a comprehensive examination of its psychometric quality remains absent from the literature. Using three independent samples of adults (study 1: n = 176, study 2: n = 240, study 3: n = 226), we tested the scale's (1) factor structure, (2) reliability, (3) convergent and discriminant validity, and (4) measurement invariance. Results suggested that the 6th item was problematic (low factor loading, conceptually distinct from other items) and when removed, a single-factor structure was appropriate. The revised 5-item PPS demonstrated satisfactory reliability, construct validity and measurement invariance. The revised 5-item PPS offers a brief and valid way to measure a personality difference shown to predict well-being.

Development and Psychometric Characteristics of the TBI-QOL Independence Item Bank and Short Form and the TBI-QOL Asking for Help Scale.

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.

Development and Calibration of the TBI-QOL Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction With Social Roles and Activities Item Banks and Short Forms.

OBJECTIVE: To develop traumatic brain injury (TBI)-optimized versions of the Quality of Life in Neurological Disorders (Neuro-QoL) Ability to Participate in Social Roles and Activities and Satisfaction with Social Roles and Activities item banks, evaluate the psychometric properties of the item banks developed for adults with TBI, develop short form and computer adaptive test (CAT) versions, and report information to facilitate research and clinical applications. 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 defined the constructs, cognitive interviews guided item revisions, 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 TBI Model Systems centers in the United States. PARTICIPANTS: Community-dwelling adults with TBI (N=556). INTERVENTIONS: None. OUTCOME MEASURES: Traumatic Brain Injury-Quality of Life (TBI-QOL) Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction with Social Roles and Activities item banks. RESULTS: Forty-five Ability to Participate in Social Roles and Activities and 41 Satisfaction with Social Roles and Activities items demonstrated good psychometric properties. Although some of the items are new, most were drawn from analogous banks in the Neuro-QoL measurement system. Consequently, the 2 TBI-QOL item banks were linked to the Neuro-QoL metric, and scores are comparable with the general population. All CAT and short forms correlated highly (>0.90) with the full item banks and demonstrate comparable construct coverage and measurement error. CONCLUSION: The TBI-QOL Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction with Social Roles and Activities item banks are TBI-optimized versions of the Neuro-QoL Ability to Participate in Social Roles and Activities and Satisfaction with Social Roles and Activities item banks and demonstrate excellent measurement properties in individuals with TBI. These measures, particularly in CAT or short form format, are suitable for efficient and precise measurement of social outcomes in clinical and research applications.

Development of Composite Scores for the TBI-QOL.

OBJECTIVE: To develop a set of composite scores that can be used for interpreting quality of life (QOL) after traumatic brain injury (TBI) using 9 of the patient-reported outcomes measures from the Traumatic Brain Injury Quality of Life (TBI-QOL) measurement system. DESIGN: Participants completed 20 item banks from the TBI-QOL as part of a larger assessment. Composite index scores were created with normalized transformation with nonlinear area conversion using scores from 9 of the banks, and are expressed in index score units, with higher composite scores indicating better functioning. For descriptive purposes, associations among composites and individual banks were evaluated using regression, along with patterns of composite scores by injury severity groups using analysis of variance. SETTING: Three medical centers in the United States. PARTICIPANTS: Community-dwelling adults (n=504) with a history of TBI. INTERVENTIONS: Not applicable. MAIN OUTCOMES MEASURE: TBI-QOL. RESULTS: Five composite indices were generated: global QOL, physical health, emotional health, cognitive health, and social health. Lookup tables are provided herein. Composite scores were highly intercorrelated (all r>.60, P<.0001), and individual TBI-QOL banks all correlate strongly with the global QOL composite in the expected direction (all r>.50, P<.0001). CONCLUSION: Researchers and clinicians can use the TBI-QOL global QOL, physical health, emotional health, cognitive health, and social health composite scores to aggregate results from multiple TBI-QOL banks, which is anticipated to ease interpretation and reliability. This work additionally highlights the importance of considering nonphysical symptoms as outcomes variables for TBI research, as cognitive, social, and emotional domains were some of the most strongly correlated banks with the global QOL composite.

Measuring Pain in TBI: Development of the TBI-QOL Pain Interference Item Bank and Short Form.

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<.001; Comparative Fix Index=0.988; Tucker-Lewis Index=0.980; Root Mean Square Error of Approximation=0.076) and a graded response model (GRM) supported item fit of 40 Pain Interference items. Items did not exhibit differential item functioning or local item dependence. GRM calibration data were used to inform the selection of a 10-item static short form and to program a TBI-QOL Pain Interference CAT. Comparative analyses indicated excellent comparability and reliability across test administration formats. 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.

Measuring Fatigue in TBI: Development of the TBI-QOL Fatigue Item Bank and Short Form.

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.

Development and Psychometric Characteristics of the TBI-QOL Communication Item Bank.

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.

Measuring Self-Reported Cognitive Function Following TBI: Development of the TBI-QOL Executive Function and Cognition-General Concerns Item Banks.

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.

Development of the TBI-QOL Headache Pain Item Bank and Short Form.

OBJECTIVE: To develop, calibrate, and evaluate the test-retest reliability of a new patient-reported outcome measure of headache pain relevant for individuals with traumatic brain injury (TBI). SETTING: Six TBI Model Systems rehabilitation centers in the United States. PARTICIPANTS: Adults with medically confirmed documentation of TBI. DESIGN: Cross-sectional calibration field testing and test-retest reliability analyses. MAIN MEASURES: Traumatic Brain Injury-Quality of Life Headache Pain item bank. RESULTS: Thirteen headache pain items were calibrated as a unidimensional measure using data from 590 participants. The new measure was reliable (α = .98; item-total correlation range: 0.71-0.91). Item parameter estimates were estimated using Samejima's Graded Response Model and a 10-item calibrated short form was created. Simulation testing confirmed that both the computer-adaptive test and the short-form administrations were equivalent to the full item bank. One- to-2-week test-retest reliability of the computer-adaptive test was high (Pearson r and intraclass correlation coefficients = 0.81). Approximately two-thirds of the sample reported at least 1 headache symptom. CONCLUSION: The Traumatic Brain Injury-Quality of Life Headache Pain item bank and short form provide researchers and clinicians with reliable measures of the subjective experience of headache symptoms for individuals with a history of TBI.