Search

Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS(®)) provides adult and pediatric self-report measures of health-related quality of life designed for use across medical conditions and the general population. The purpose of this study was to examine the feasibility and validity of the PROMIS(®) Pediatric Short Form and computer-adaptive test (CAT) mobility measures in children with cerebral palsy (CP).Methods: Eighty-two children with CP completed self-report (PROMIS(®) Mobility Short Form, PROMIS(®) Mobility CAT, Pediatric Quality of Life Inventory™) and performance-based assessments of mobility (Timed Up and Go, Gross Motor Function Measure). Parents provided three proxy reports of child mobility (Pediatric Outcomes Data Collection Instrument, Functional Assessment Questionnaire, Shriners Hospitals for Children CP-CAT). Validity of PROMIS(®) instruments was examined through correlations with other measures and "known groups" analyses determined by Gross Motor Function Classification System (GMFCS).Results: On average, the PROMIS(®) CAT required less than seven items and 2 minutes to administer. Both PROMIS(®) measures showed moderate to high correlations with child- and parent-proxy report of child mobility; correlations with performance-based measure were small for the PROMIS(®) Short Form and non-significant for the PROMIS(®) CAT. All measures except for the PROMIS(®) CAT were able to distinguish between GMFCS categories.Conclusions: Results support the convergent and discriminant validity of the pediatric PROMIS(®) Mobility Short Form in children with CP. The PROMIS(®) Mobility CAT correlates well with child report and parent report of mobility but not with performance-based measures and does not differentiate between known mobility groups. [ABSTRACT FROM AUTHOR]

Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS ®) provides adult and pediatric self-report measures of health-related quality of life designed for use across medical conditions and the general population. The purpose of this study was to examine the feasibility and validity of the PROMIS ® Pediatric Short Form and computer-adaptive test (CAT) mobility measures in children with cerebral palsy (CP). Methods: Eighty-two children with CP completed self-report (PROMIS ® Mobility Short Form, PROMIS ® Mobility CAT, Pediatric Quality of Life Inventory™) and performance-based assessments of mobility (Timed Up and Go, Gross Motor Function Measure). Parents provided three proxy reports of child mobility (Pediatric Outcomes Data Collection Instrument, Functional Assessment Questionnaire, Shriners Hospitals for Children CP-CAT). Validity of PROMIS ® instruments was examined through correlations with other measures and “known groups” analyses determined by Gross Motor Function Classification System (GMFCS). Results: On average, the PROMIS ® CAT required less than seven items and 2 minutes to administer. Both PROMIS ® measures showed moderate to high correlations with child- and parent-proxy report of child mobility; correlations with performance-based measure were small for the PROMIS ® Short Form and non-significant for the PROMIS ® CAT. All measures except for the PROMIS ® CAT were able to distinguish between GMFCS categories. Conclusions: Results support the convergent and discriminant validity of the pediatric PROMIS ® Mobility Short Form in children with CP. The PROMIS ® Mobility CAT correlates well with child report and parent report of mobility but not with performance-based measures and does not differentiate between known mobility groups. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: To identify medically relevant aspects of blood pressure dysregulation (BPD) related to quality of life in individuals with spinal cord injury (SCI), and to propose an integrated conceptual framework based on input from both individuals with SCI and their clinical providers. This framework will serve as a guide for the development of a patient-reported outcome (PRO) measure specifically related to BPD. Design: Three focus groups with individuals with SCI and 3 groups with SCI providers were analyzed using grounded-theory based qualitative analysis to ascertain how blood pressure impacts health-related quality of life (HRQOL) in individuals with SCI. Setting: Focus groups were conducted at 2 Veterans Affairs medical centers and a research center. Participants: Individuals with SCI (n=27) in 3 focus groups and clinical providers (n=25) in 3 focus groups. Interventions: Not applicable. Main Outcome Measures: Not applicable. Results: Qualitative analysis indicated that all focus groups spent the highest percentage of time discussing symptoms of BPD (39%), followed by precipitators/causes of BPD (16%), preventative actions (15%), corrective actions (12%), and the impact that BPD has on social or emotional functioning (8%). While patient/consumer focus groups and provider focus groups raised similar issues, providers spent more time discussing precipitators/causes of BPD and preventative actions (38%) than patient/consumer groups (24%). Conclusions: These results suggest that BPD uniquely and adversely impacts HRQOL in persons with SCI. While both individuals with SCI and their providers highlighted the relevant symptoms of BPD, the SCI providers offered additional detailed information regarding the precipitators/causes and what can be done to prevent/treat BPD. Further, the results suggest that persons with SCI are aware of how BPD impacts their HRQOL and are able to distinguish between subtle signs and symptoms. These findings exemplify the need for a validated and sensitive clinical measurement tool that can assess the extent to which BPD impacts HRQOL in patients with SCI. [Copyright &y& Elsevier]

ABSTRACT This chapter focuses on the NIH Toolbox List Sorting Working Memory Test, which was developed to assess processing speed within the NIH Toolbox Cognition Battery (CB). This test is a sequencing task requiring children and adults to process stimuli (presented both visually and auditorily) and sequence the stimuli according to size. We describe the development of the NIH Toolbox List Sorting Working Memory Test, highlighting its utility in children. We examine descriptive data, test-retest reliability, and convergent and discriminant validity. Results indicated that List Sorting performance was positively correlated with age indicating that performance on the task improved throughout childhood and early adolescence. Further, test-retest reliability coefficients were high and there was support for both convergent and discriminant validity. These data suggest that the NIH Toolbox List Sorting Working Memory Test is reliable and shows evidence of construct validity. [ABSTRACT FROM AUTHOR]

ABSTRACT This monograph presents the pediatric portion of the National Institutes of Health (NIH) Toolbox Cognition Battery (CB) of the NIH Toolbox for the Assessment of Neurological and Behavioral Function. The NIH Toolbox is an initiative of the Neuroscience Blueprint, a collaborative framework through which 16 NIH Institutes, Centers, and Offices jointly support neuroscience-related research, to accelerate discoveries and reduce the burden of nervous system disorders. The CB is one of four modules that measure cognitive, emotional, sensory, and motor health across the lifespan. The CB is unique in its continuity across childhood, adolescence, early adulthood, and old age, and in order to help create a common currency among disparate studies, it is also available at low cost to researchers for use in large-scale longitudinal and epidemiologic studies. This chapter describes the evolution of the CB; methods for selecting cognitive subdomains and instruments; the rationale for test design; and a validation study in children and adolescents, ages 3-15 years. Subsequent chapters feature detailed discussions of each test measure and its psychometric properties (Chapters 2-6), the factor structure of the test battery (Chapter 7), the effects of age and education on composite test scores (Chapter 8), and a final summary and discussion (Chapter 9). As the chapters in this monograph demonstrate, the CB has excellent psychometric properties, and the validation study provided evidence for the increasing differentiation of cognitive abilities with age. [ABSTRACT FROM AUTHOR]

Purpose: Virtual reality (VR) is a relatively new technology that is currently utilized in a wide variety of settings to test and train individuals in specialized skills. This study examines methods for improving driver retraining protocols for persons with spinal cord injury (SCI). Method: We compared a VR driving simulator, under two different display conditions, a head mounted display (HMD) and a three screen display (TSD) to identify the best method for retraining driving skills following SCI. Results: Although there was minimal evidence for driving performance difficulties in the HMD condition relative to the TSD condition (e.g. greater number of times for being off course and longer stopping latencies for the HMD condition), rates of simulator sickness did not differ between display conditions. Conclusions: Taken together, findings suggest that both the HMD and the TSD are reasonable simulator options for driver retraining in SCI. [ABSTRACT FROM AUTHOR]

Patient-reported outcomes (PROs) play an increasingly important role in clinical practice and research. Modern psychometric methods such as item response theory (IRT) enable the creation of item banks that support fixed-length forms as well as computerized adaptive testing (CAT), often resulting in improved measurement precision and responsiveness. Here we describe and discuss the case for developing an international core set of PROs building from the US PROMIS® network. PROMIS is a U.S.-based cooperative group of research sites and centers of excellence convened to develop and standardize PRO measures across studies and settings. If extended to a global collaboration, PROMIS has the potential to transform PRO measurement by creating a shared, unifying terminology and metric for reporting of common symptoms and functional life domains. Extending a common set of standardized PRO measures to the international community offers great potential for improving patient-centered research, clinical trials reporting, population monitoring, and health care worldwide. Benefits of such standardization include the possibility of: international syntheses (such as meta-analyses) of research findings; international population monitoring and policy development; health services administrators and planners access to relevant information on the populations they serve; better assessment and monitoring of patients by providers; and improved shared decision making. The goal of the current PROMIS International initiative is to ensure that item banks are translated and culturally adapted for use in adults and children in as many countries as possible. The process includes 3 key steps: translation/cultural adaptation, calibration, and validation. A universal translation, an approach focusing on commonalities, rather than differences across versions developed in regions or countries speaking the same language, is proposed to ensure conceptual equivalence for all items. International item calibration using nationally representative samples of adults and children within countries is essential to demonstrate that all items possess expected strong measurement properties. Finally, it is important to demonstrate that the PROMIS measures are valid, reliable and responsive to change when used in an international context. IRT item banking will allow for tailoring within countries and facilitate growth and evolution of PROs through contributions from the international measurement community. A number of opportunities and challenges of international development of PROs item banks are discussed. [ABSTRACT FROM AUTHOR]

Abstract: Tulsky DS, Jette AM, Kisala PA, Kalpakjian C, Dijkers MP, Whiteneck G, Ni P, Kirshblum S, Charlifue S, Heinemann AW, Forchheimer M, Slavin MD, Houlihan B, Tate DG, Dyson-Hudson T, Fyffe D, Williams S, Zanca J. Spinal Cord Injury-Functional Index: item banks to measure physical functioning in individuals with spinal cord injury. Objectives: To develop a comprehensive set of patient-reported items to assess multiple aspects of physical functioning relevant to the lives of people with spinal cord injury (SCI), and to evaluate the underlying structure of physical functioning. Design: Cross-sectional. Setting: Inpatient and community. Participants: Item pools of physical functioning were developed, refined, and field tested in a large sample of individuals (N=855) with traumatic SCI stratified by diagnosis, severity, and time since injury. Interventions: None. Main Outcome Measure: Spinal Cord Injury-Functional Index (SCI-FI) measurement system. Results: Confirmatory factor analysis (CFA) indicated that a 5-factor model, including basic mobility, ambulation, wheelchair mobility, self-care, and fine motor function, had the best model fit and was most closely aligned conceptually with feedback received from individuals with SCI and SCI clinicians. When just the items making up basic mobility were tested in CFA, the fit statistics indicated strong support for a unidimensional model. Similar results were demonstrated for each of the other 4 factors, indicating unidimensional models. Conclusions: Though unidimensional or 2-factor (mobility and upper extremity) models of physical functioning make up outcomes measures in the general population, the underlying structure of physical function in SCI is more complex. A 5-factor solution allows for comprehensive assessment of key domain areas of physical functioning. These results informed the structure and development of the SCI-FI measurement system of physical functioning. [ABSTRACT FROM AUTHOR]

Abstract: 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. [ABSTRACT FROM AUTHOR]

Abstract: Botticello AL, Chen Y, Cao Y, Tulsky DS. Do communities matter after rehabilitation? The effect of socioeconomic and urban stratification on well-being after spinal cord injury. Objective: To assess the influence of community-level socioeconomic status (SES) and urban composition on well-being after spinal cord injury (SCI) rehabilitation. Design: Retrospective analysis of cross-sectional survey data. Setting: Two participating centers in the SCI Model Systems (SCIMS) program. Participants: Persons (N=1454) with traumatic SCI from New Jersey and Alabama enrolled in the SCIMS database in 2000 to 2009. Intervention: Not applicable. Main Outcome Measures: Dichotomous measures of perceived health (ill vs good health), life satisfaction (dissatisfied vs satisfied), and depressive symptoms (presence of a syndrome vs not) to assess well-being. Results: Multilevel logistic regression was used to model community effects on each indicator of well-being. The likelihood of ill health and dissatisfaction with life in people with SCI, but not depressive symptoms, varied across communities. Community SES was related inversely to the odds of reporting ill health. However, the odds for dissatisfaction were higher in persons with SCI living in high SES and urban communities. Associations between community predictors and dissatisfaction with life were sustained after controlling for individual differences in injury severity, SES, and demographics, whereas individual SES was a stronger predictor of ill health than community SES. Conclusion: This research suggests that community stratification influences the likelihood for diminished well-being for persons with SCI after rehabilitation. Understanding the contribution of communities in long-term outcomes after SCI rehabilitation is needed to inform future interventions aimed at preventing disability in this population. [Copyright &y& Elsevier]

This paper presents the Delayed Memory Index (DMI) as an alternative to the General Memory Index (GMI) of the Weschler Memory Scale-Third Edition (WMS-III). The WMS-III Immediate Memory Index (IMI) and the GMI are not parallel in structure, making a direct comparison between these index scores (i.e., immediate vs. delayed memory variables) difficult. The IMI is composed of the sum of scaled scores of four subtests (Logical Memory I, Verbal Paired Associates I, Faces I, and Family Pictures I) while the GMI is composed of the sum of scaled scores of five subtests (Logical Memory II, Verbal Paired Associates II, Faces II, Family Pictures II and Auditory Recognition Delayed). Inclusion of Auditory Recognition Delayed in the GMI is also problematic as it is highly skewed and limited by extreme ceiling effects (see Tulsky, Chiaravalloti, Palmer, & Chelune, 2003). To remedy these problems, we present a new index score that does not include auditory recognition, the Delayed Memory Index. Normative tables for the new Delayed Memory Index based on the inclusion of the Faces subtest, or alternatively the Visual Reproduction subtest, are presented, and initial estimates of their psychometric properties are described. [ABSTRACT FROM AUTHOR]

The Letter Number Sequencing subtest of the WAIS-III and WMS-III was administered at the end of the standardization edition of the WMS-III. It was not administered as part of the WAIS-III standardization battery. Nevertheless, the subtest was included in the published version of the WAIS-III. This study examines differences between examinees administered the Letter Number Sequencing subtest at three different times during a psychological battery: (1) as part of the published battery, (2) as part of the WMS-III when the WMS-III was administered as the first test in a sequence, and (3) as part of the WMS-III standardization when the WAIS-III was administered immediately preceding the WMS-III. The participants were 372 examinees (n = 124 in each condition) who were matched on key demographic variables. A repeated measures MANOVA yielded no difference in subtest scores when administered in any of these conditions. The results show no evidence of fatigue or ordering effects on the Letter Number Sequencing subtest. [ABSTRACT FROM AUTHOR]

Tables included in the WAIS-III report the frequency of discrepancies between IQ and index scores independent of the directionality of the score. If an examiner does not have any a priori hypothesis about which skill may be more developed and which skills may be weaknesses, it is appropriate to use these tables as they are. In this case the examiner would be looking for unusually large discrepancies between scores irrespective of direction. When an examiner has a hypothesis about which skills may be weaknesses and strengths for an individual, the frequencies that are based upon an absolute value of the discrepancy will cause examiners to overestimate the frequency of the occurrence of the discrepancy score in question. Sattler and Ryan (1998) and Tulsky, Zhu, and Vasquez (1998) suggested dividing the frequencies reported in the WAIS-III tables in half to obtain the correct base rate. This suggestion is tested in this paper. New observed frequency tables were derived from the WAIS-III and WMS-III standardization samples and these frequencies were compared against the estimated frequencies using the method described by Sattler and Ryan (1998) and Tulsky et al. (1998). The differences between these two methods were calculated and are, for the most part, insignificant. In light of the similarity between the methods, the implications of using observed frequencies versus estimated frequencies is discussed. [ABSTRACT FROM AUTHOR]

Test-order effect on the WAIS-III and WMS-III scores was evaluated using the WMS-III standardization sample. Participants completed the standardization editions of the WAIS-III and WMS-III in one session, with the tests administered in roughly counterbalanced order. Repeated measure MANOVA analyses were conducted to determine if there was an overall test-order effect for subtest, index, or IQ scores. No significant test-order effects were found for either the WAIS-III index or IQ scores or for the WMS-III index scores. At the subtest level, the majority of the WAIS-III and WMS-III subtests did not show a significant test-order effect. The exceptions were Digit Span and Digit Symbol-Coding on the WAIS-III and Faces II and Logical Memory II on the WMS-III. Although statistically significant test-order effects were found on these subtests, the effect sizes were small. This study indicates that the test-order effect is not a potential threat to the internal validity of the WAIS-III and WMS-III normative data. The practical implications of the current study are discussed. [ABSTRACT FROM AUTHOR]

Focuses on J.R. Flynn's assessment of intelligence quotient (IQ) gain. Differences in the subtests that make up IQ scores; Composition of the norm sample; Potential misinterpretations of the findings by Flynn.

Background: This paper describes the development of the Functional Assessment of Cancer Therapy-Colorectal (FACT-C)--a questionnaire assessing quality of life concerns pertinent to colorectal cancer patients. This self-report instrument combines specific concerns related to colorectal cancer with concerns that are common to all cancer patients as assessed with the FACT-General (FACT-G).Method: Three separate and distinct validation samples were used with different ethnic and stage of disease compositions.Results: Results suggest that the FACT-C is a reliable and valid measure in both its English and Spanish language versions. Specifically, the FACT-C evidenced good internal consistency reliability and concurrent validity, as well as an ability to distinguish between groups based on functional status and extent of disease. The FACT-C was also found to be sensitive to changes in functional status. Colorectal cancer-specific items form the Colorectal Cancer Subscale (CCS) which was found to have adequate convergent and divergent validity. Internal consistency was adequate in most samples. In addition, the CCS was able to distinguish among groups that differed in functional status and was sensitive to change in functional status.Conclusion: It is recommended that the entire FACT-C (rather than simply the CCS) be used when studying patients with colorectal cancer in order to provide a comprehensive assessment of quality of life. Recommendations are offered concerning the appropriate use of these measures in clinical research and directions for future research with colorectal cancer patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives To evaluate the psychometric properties of the Spinal Cord Injury–Functional Index/Assistive Technology (SCI-FI/AT) short forms (SFs) in the domains of basic mobility, self-care, fine motor function, and ambulation based on internal consistency; correlations between SFs and full item banks, and a 10-item computerized adaptive test (CAT) version; magnitude of ceiling and floor effects; and measurement precision across a broad range of function in a sample of adults with spinal cord injury (SCI). Design Cross-sectional cohort study. Setting Nine national Spinal Cord Injury Model Systems programs. Participants A sample of adults with traumatic SCI (N=460) stratified by level of injury (paraplegia/tetraplegia), completeness of injury, and time since SCI. Interventions Not applicable. Main Outcome Measures SCI-FI/AT full item bank, 10-item CAT, and SFs (with separate Self-Care and Fine Motor Function SFs for persons with tetraplegia and paraplegia). Results The SCI-FI/AT SFs demonstrated very good internal consistency, group-level reliability, and excellent correlations between SFs and scores based on the CAT version and the total item bank. Ceiling and floor effects are acceptable (except for unacceptable ceiling effects for persons with paraplegia on the Self-Care and Fine Motor Function SFs). The test information functions are excellent across a broad range of functioning typical of persons with paraplegia and tetraplegia. Conclusions Clinicians and researchers should consider using the SCI-FI/AT SFs to assess functioning with the use of assistive technology when CAT applications are not available. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index (SCI-FI) short forms (basic mobility, self-care, fine motor, ambulation, manual wheelchair, and power wheelchair) based on internal consistency; correlations between short forms banks, full item bank forms, and a 10-item computer adaptive test version; magnitude of ceiling and floor effects; and test information functions. Design: Cross-sectional cohort study. Setting: Six rehabilitation hospitals in the United States. Participants: Individuals with traumatic spinal cord injury (N=855) recruited from 6 national Spinal Cord Injury Model Systems facilities. Interventions: Not applicable. Main Outcome Measures: SCI-FI full item bank, 10-item computer adaptive test, and parallel short form scores. Results: The SCI-FI short forms (with separate versions for individuals with paraplegia and tetraplegia) demonstrate very good internal consistency, group-level reliability, excellent correlations between short forms and scores based on the total item bank, and minimal ceiling and floor effects (except ceiling effects for persons with paraplegia on self-care, fine motor, and power wheelchair ability and floor effects for persons with tetraplegia on self-care, fine motor, and manual wheelchair ability). The test information functions are acceptable across the range of scores where most persons in the sample performed. Conclusions: Clinicians and researchers should consider the SCI-FI short forms when computer adaptive testing is not feasible. [Copyright &y& Elsevier]

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. [ABSTRACT FROM AUTHOR]

Abstract: Carlozzi NE, Tulsky DS, Kisala PA. Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury. This 2-part qualitative study explored health-related quality of life (HRQOL) in individuals with traumatic brain injury (TBI). A community-based participatory action research design was used, which emphasizes collaboration between researchers and individuals with disabilities to ensure that results are relevant for individuals with TBI. In study 1, community members (N=20) with TBI served as “experts” during 1-on-1 semistructured interviews, reviewing current HRQOL items and identifying HRQOL issues commonly experienced by individuals with TBI. Each participant identified at least 31 issues, with most generating more than 90 responses, highlighting the multifaceted nature of HRQOL in TBI. Study 2 consisted of 7 patient/consumer groups (33 individuals with TBI), 4 caregiver groups (17 caregivers), and 2 provider groups (15 providers). Qualitative analysis of patient focus groups indicated that 48% of focus group comments were related to emotional issues; 23%, to social functioning; 14%, to physical functioning; 11%, to cognition; and 7%, to personality changes (caregiver and provider focus group analysis indicated identical patterns of findings). In addition, both studies evaluated the applicability in TBI of generic items developed by the Patient-Reported Outcomes Measurement Information System and the Neurology Quality of Life Measurement initiative. Findings suggest that although there is some overlap between current generic measures of HRQOL and concepts reported by individuals with TBI, these generic measures do not capture the full complexity of HRQOL in TBI. TBI-targeted item banks are needed to ensure sensitive assessment of HRQOL in TBI. [Copyright &y& Elsevier]

The NIH Toolbox Pattern Comparison Processing Speed Test was developed to assess processing speed. While initial validation work provides preliminary support for this test in both children and adults, more work is needed to ensure dependability and generalizability. Thus, this replication study examines descriptive data (including age effects), test-retest reliability, and construct validity in n = 4,859 participants ages 3-85 years (matched to 2010 census data). Although the Pattern Comparison was not appropriate for all 3 and 4 years old, by ages 5 and 6, more meaningful scores were apparent. There was evidence for convergent and discriminant validity. There was also a moderate practice effect (i.e., increase of 5.5 points) over a 1-week time frame. Pattern Comparison exhibits a number of strengths: it is appropriate for use across the lifespan (ages 5-85), it is short and easy to administer, and there is support for construct validity. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: This study investigates the role of area economic characteristics in predicting employment–a key aspect of social participation for adults with physical disabilities–using data from a national registry of persons with spinal cord injury (SCI). SCI results in chronic impairment and most commonly occurs during young adulthood when working is a key aspect of the adult social role. Geocoded data were collected from two of the 14 SCI Model Systems (SCIMS) centers involved in the National SCIMS database and used to link individual-level data with area-level measures extracted from the 2000 US Census. The analysis included participants of working-age (18–64 years) and living in the community (N =1013). Hierarchical generalized linear modeling was used to estimate area-level variation in participation and the relative contribution of area-level economic indicators, adjusted for individual-level health, functioning, and background characteristics. The likelihood of employment for adults with SCI varied by area and was associated with area SES and urbanicity, but not area unemployment. These findings suggest that variation in area economic conditions may affect the feasibility of employment for persons who experience chronic physical disability during adulthood, thus limiting full participation in society. [Copyright &y& Elsevier]

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 PRObookmarking 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. [ABSTRACT FROM AUTHOR]

While prior studies have found parental socioeconomic status (SES) affects the outcomes of pediatric traumatic brain injury (TBI), the longitudinal trajectory of this effect is not well understood. This prospective cohort study included children 8–18 years of age admitted to six sites with a complicated mild (n = 123) or moderate-severe TBI (n = 47). We used caregiver education and household poverty level as predictors, and multiple quality of life and health behavior domains as outcomes. Differences at 6, 12, and 24 months from baseline ratings of pre-injury functioning were compared by SES. We examined the association between measures of SES and domains of functioning over the 24 months post-injury in children with a complicated mild or moderate- severe TBI, and determined how this association varied over time. Parental education was associated with recovery among children with complicated mild TBI; outcomes at 6, 12, and 24 months were substantially poorer than at baseline for children with the least educated parents. After moderate-severe TBI, children in households with lower incomes had poorer outcomes compared to baseline across time. Parental education and household income were associated with recovery trajectories for children with TBI of varying severity. [ABSTRACT FROM AUTHOR]

Objective: The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) is a patient-reported outcome measurement system that is specific to caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI). This measurement system includes 26 item banks that represent both generic (i.e., borrowed from existing measurement systems) and caregiver-specific components of health-related quality of life (HRQOL). This report provides reliability and validity data for measures within the TBI-CareQOL that have not previously been reported (i.e., 4 caregiver-specific and 7 generic measures of HRQOL). Design: Three hundred eighty-five caregivers of persons with TBI completed caregiver-specific computer adaptive tests (CATs) for Feelings of Loss-Self, Caregiver Strain, Caregiver-Specific Anxiety, and Feeling Trapped, as well as generic measures of HRQOL from complementary measurement systems (i.e., Neuro-QoL Positive Affect and Well-Being; PROMIS Sleep-Related Impairment; NIH Toolbox Perceived Stress, General Life Satisfaction, and Self Efficacy; TBI-QOL Resilience and Grief/Loss). Caregivers also completed several additional measures to establish convergent and discriminant validity, as well as the Mayo Portland Adaptability Index, 4th ed. Results: Findings support the internal consistency reliability (all alphas > .85) and test-retest stability (all alphas >.73) of the TBI-CareQOL measures. Convergent validity was supported by moderate to high correlations between the TBI-CareQOL measures and related measures, whereas discriminant validity was supported by low correlations between the TBI-CareQOL measures and unrelated constructs. Known-groups validity was also supported. Conclusions: Findings support the reliability and validity of the item banks that comprise the TBI-CareQOL Measurement System. These measures should be considered for any standardized assessment of HRQOL in caregivers of civilians and SMVs with TBI. [ABSTRACT FROM AUTHOR]

Purpose/Objective: To apply multivariate base rate analyses to the National Institutes of Health Toolbox Cognition Battery (NIHTB-CB) to facilitate the identification of cognitive impairment in individuals with traumatic brain injury (TBI). Research Method/Design: In a multisite cross-sectional design, 158 participants who sustained a complicated mild or moderate TBI (n = 74) or severe TBI (n = 84) at least 1 year earlier were administered the NIHTB-CB. The NIHTB-CB is comprised of 2 crystallized cognition tests (reflecting premorbid ability) and 5 fluid cognition tests, measuring processing speed, memory, and executive functioning. Base rates for obtaining 0 to 5 low fluid cognition scores were calculated across a range of cutoffs for defining a low test score (≤25th to 5th percentiles). Base rates of low scores in the TBI sample were compared to the NIHTB-CB normative sample using diagnostic accuracy statistics. Results: The proportion of the TBI sample obtaining low scores decreased as the cutoff for defining a low score decreased. Individuals with lower premorbid cognitive ability, as measured by NIHTB-CB Crystallized Composite score, tended to produce more low scores on the NIHTB-CB fluid cognition tests, even when using fully demographically adjusted scores. Certain patterns of low scores were associated with TBI (defined as likelihood ratio >2.0), whereas others were nonspecific, occurring almost as often in participants without TBI. Conclusions/Implications: Premorbid ability stratified base rate tables provided in this article can guide researchers and clinicians in the interpretation of NIHTB-CB performance in adults with TBI. [ABSTRACT FROM AUTHOR]

Objective: The association between demographic characteristics and neurocognitive performance is well established; however, clinicians may have difficulty selecting when to use uncorrected versus demographically corrected scores. We compared these score types in individuals with traumatic brain injury (TBI) and stroke, on the National Institutes of Health Toolbox--Cognition Battery (NIHTB-CB). Research Method: Adults with TBI and stroke were demographically matched to controls, and completed the NIHTB-CB. Published "corrected scores" are adjusted for age, education, sex, and race/ethnicity; "uncorrected scores" were created using census data to represent the average adult in the U.S. population. Results: Effect sizes for the TBI and stroke groups versus controls were larger using corrected scores compared with uncorrected scores for the fluid composite (uncorrected to corrected effect sizes: TBI: d = 0.66, p< .001 to 0.83, p < .001; stroke d = 0.97, p < .001 to 1.10, p < .001). For the crystallized composite, effect sizes for the TBI and stroke groups versus controls were smaller and nonsignificant using corrected scores (uncorrected to corrected effect sizes: TBI d = 0.23, p = .03 to 0.20, p = .06; stroke d = 0.40, p < .001 to 0.17, p = .09). In the injury groups, demographic characteristics accounted for up to 33% of variance in uncorrected scores (p < .001), but <5% of variance in corrected scores (p >.06). Conclusions: Corrected scores were more sensitive to neurocognitive impairments in the brain-injured groups. Corrected scores have the advantage of controlling for variance associated with premorbid factors rather than changes in neurological functioning; are more helpful in characterizing acquired neurocognitive changes; and can aid in the interpretation of test performance. [ABSTRACT FROM AUTHOR]

Purpose/Objective: The National Institutes of Health Toolbox Cognition Battery (NIHTB-CB) includes a group of brief measures (i.e., 30 min) designed to assess language, processing speed, working memory, episodic memory, and executive functioning. These subtests can be combined to create composite scores that reflect fluid and crystallized cognition, as well as overall cognition. The battery is of limited utility with individuals who have impaired upper extremity motor functioning. This manuscript examines the accuracy of the Oral Symbol Digit Modalities Test as a substitute for the Pattern Comparison Processing Speed Test for computing motor-free composite scores. Research Method/Design: Individuals with spinal cord injury (SCI; n = 188), traumatic brain injury (TBI; n = 159), or stroke (n = 180) completed the NIHTB-CB. We used the Oral Symbol Digit Modalities Test to create a Motor-Free Pattern Comparison score; this was used to create revised, Motor-Free Composite scores for Fluid Cognition and Overall Cognition. Results: Although there were statistically significant overall differences between the two Fluid and Overall Cognition composite scores for some of the clinical groups (scores based on the motor-free approach were significantly higher than the original score), these differences were small and partly because of overclassification of impaired processing speed in participants with motor impairment. There was good to substantial agreement with regard to "impairment" classification between the two sets of Original and Motor-Free composite scores. Conclusions/Implications: Although the Motor-Free scores are not a perfect match for the Original Composite scores, they provide a reliable and valid way to examine overall and fluid cognition in individuals with upper extremity motor impairments. [ABSTRACT FROM AUTHOR]

Objective: The National Institutes of Health (NIH) Toolbox (NIHTB) for the Assessment of Behavior and Neurological Function Cognition Battery (NIHTB-CB) provides a brief assessment (approximately 30 min) of key components of cognition. This article examines construct validity to support the clinical utility of the NIHTB-CB in individuals with stroke. Research Method: A total of 131 individuals with stroke (n = 71 mild stroke; n = 60 moderate/severe stroke) completed the NIHTB-CB. Univariate analyses were conducted to examine the cognitive profiles of the two different stroke groups (mild vs. moderate/severe stroke) on NIHTB-CB measures and composite scores. Pearson correlations were conducted between NIHTB-CB and established measures to examine convergent and discriminant validity. Effect sizes and clinical impairment rates for the different NIHTB-CB measures and composite scores were also examined. Results: Participants experiencing moderate to severe stroke had poorer performance than did individuals with mild stroke on several of the NIHTB cognition measures. Evidence of convergent validity was provided by moderate to strong correlations between the NIHTB measures and the corresponding standard neuropsychological test (Pearson rs ranged from 0.31 to 0.88; median = .60). Evidence of discriminant validity was provided by smaller correlations between different cognitive domains than correlations of measures within the same domain. Effect sizes for composite and subtest scores regarding stroke severity were generally moderate-to-large. In addition, 42% of the sample were exhibiting mild cognitive impairment (i.e., ≥2 low scores on fluid tests). Conclusions: Findings provide support for the construct validity of the NIHTB-CB in individuals with stroke. [ABSTRACT FROM AUTHOR]