Efficacy and tolerability of febuxostat in gout patients on dialysis.

BACKGROUND: There are no sufficient data available on the use of febuxostat in patients undergoing dialysis. AIM: To investigate the efficacy and tolerability of febuxostat in gout patients on dialysis. METHODS: We retrospectively reviewed clinical and laboratory data available from a referral centre from January 2012 to December 2018. We included gout patients who initiated febuxostat during dialysis. Data regarding serum uric acid levels before and after the febuxostat treatment and clinical information such as gout attack after febuxostat initiation, as well as adverse events involving febuxostat treatment, were obtained from medical records. RESULTS: Among 62 patients who were treated with febuxostat for over 3 months, 45 were undergoing haemodialysis (HD) and 17 were undergoing peritoneal dialysis (PD). The mean serum uric acid level was significantly reduced 3 months after treatment (3.71 ± 1.32 mg/dL) compared with that at the pretreatment level (9.36 ± 2.06 mg/dL) (P < 0.001). The serum uric acid level was observed to be significantly reduced at 3 months in both HD and PD patients and subsequently remained at a significantly reduced level for 12 months. Of the 62 patients, only two stopped febuxostat due to its adverse effects. Initial dose of 80 mg/day was associated with higher adverse events compared to dose of 20-40 mg/day (odds ratio 8.25, 95% confidence interval 1.90-35.97, P = 0.006). CONCLUSIONS: Febuxostat is efficacious and well tolerated in gout patients on dialysis. Febuxostat taken at dose of 20-40 mg/day might be appropriate initial dose in patients undergoing dialysis.

PROMIS® Adult Health Profiles: Efficient Short-Form Measures of Seven Health Domains.

BACKGROUND: There is a need for valid self-report measures of core health-related quality of life (HRQoL) domains. OBJECTIVE: To derive brief, reliable and valid health profile measures from the Patient Reported Outcomes Measurement Information System® (PROMIS®) item banks. METHODS: Literature review, investigator consensus process, item response theory (IRT) analysis, and expert review of scaling results from multiple PROMIS data sets. We developed 3 profile measures ranging in length from 29 to 57 questions. These profiles assess important HRQoL domains with highly informative subsets of items from respective item banks and yield reliable information across mild-to-severe levels of HRQoL experiences. Each instrument assesses the domains of pain interference, fatigue, depression, anxiety, sleep disturbance, physical function, and social function using 4-, 6-, and 8-item short forms for each domain, and an average pain intensity domain score, using a 0-10 numeric rating scale. RESULTS: With few exceptions, all domain short forms within the profile measures were highly reliable across at least 3 standard deviation (30 T-score) units and were strongly correlated with the full bank scores. Construct validity with ratings of general health and quality of life was demonstrated. Information to inform statistical power for clinical and general population samples is also provided. CONCLUSIONS: Although these profile measures have been used widely, with summary scoring routines published, description of their development, reliability, and initial validity has not been published until this article. Further evaluation of these measures and clinical applications are encouraged.

Measuring Self-Reported Physical Function in Individuals With TBI: Development of the TBI-QOL Mobility and Upper Extremity Item Banks and Short Forms.

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.

Linking the GAD-7 and PHQ-9 to the TBI-QOL Anxiety and Depression Item Banks.

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.

Ensuring content validity of patient-reported outcomes: a shadow-test approach to their adaptive measurement.

PURPOSE: Most computerized adaptive testing (CAT) applications in patient-reported outcomes (PRO) measurement to date are reliability-centric, with a primary objective of maximizing measurement efficiency. A key concern and a potential threat to validity is that, when left unconstrained, individual CAT administrations could have items with systematically different attributes, e.g., sub-domain coverage. This paper aims to provide a solution to the problem from an optimal test design framework using the shadow-test approach to CAT. METHODS: Following the approach, a case study was conducted using the PROMIS® (Patient-Reported Outcomes Measurement Information System) fatigue item bank both with empirical and simulated response data. Comparisons between CAT administrations without and with the enforcement of content and item pool usage constraints were examined. RESULTS: The unconstrained CAT exhibited a high degree of variation in items selected from different substrata of the item bank. Contrastingly, the shadow-test approach delivered CAT administrations conforming to all specifications with a minimal loss in measurement efficiency. CONCLUSIONS: The optimal test design and shadow-test approach to CAT provide a flexible framework for solving complex test-assembly problems with better control of their domain coverage than for the conventional use of CAT in PRO measurement. Applications in a wide array of PRO domains are expected to lead to more controlled and balanced use of CAT in the field.

Do measures of depressive symptoms function differently in people with spinal cord injury versus primary care patients: the CES-D, PHQ-9, and PROMIS®-D.

PURPOSE: To evaluate whether items of three measures of depressive symptoms function differently in persons with spinal cord injury (SCI) than in persons from a primary care sample. METHODS: This study was a retrospective analysis of responses to the Patient Health Questionnaire depression scale, the Center for Epidemiological Studies Depression scale, and the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS®) version 1.0 eight-item depression short form 8b (PROMIS-D). The presence of differential item function (DIF) was evaluated using ordinal logistic regression. RESULTS: No items of any of the three target measures were flagged for DIF based on standard criteria. In a follow-up sensitivity analyses, the criterion was changed to make the analysis more sensitive to potential DIF. Scores were corrected for DIF flagged under this criterion. Minimal differences were found between the original scores and those corrected for DIF under the sensitivity criterion. CONCLUSIONS: The three depression screening measures evaluated in this study did not perform differently in samples of individuals with SCI compared to general and community samples. Transdiagnostic symptoms did not appear to spuriously inflate depression severity estimates when administered to people with SCI.

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

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

Development and psychometric characteristics of the SCI-QOL Pressure Ulcers scale and short form.

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.

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

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.

Measuring psychological trauma after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Psychological Trauma item bank and short form.

OBJECTIVE: To describe the development and psychometric properties of the SCI-QOL Psychological Trauma item bank and short form. DESIGN: Using a mixed-methods design, we developed and tested a Psychological Trauma item bank with patient and provider focus groups, cognitive interviews, and item response theory based analytic approaches, including tests of model fit, differential item functioning (DIF) and precision. SETTING: We tested a 31-item pool at several medical institutions 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 Veterans Administration hospital. PARTICIPANTS: A total of 716 individuals with SCI completed the trauma items RESULTS: The 31 items fit a unidimensional model (CFI=0.952; RMSEA=0.061) and demonstrated good precision (theta range between 0.6 and 2.5). Nine items demonstrated negligible DIF with little impact on score estimates. The final calibrated item bank contains 19 items CONCLUSION: The SCI-QOL Psychological Trauma item bank is a psychometrically robust measurement tool from which a short form and a computer adaptive test (CAT) version are available.

Measuring resilience after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Resilience item bank and short form.

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.

Measuring stigma after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Stigma item bank and short form.

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.

Measuring anxiety after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Anxiety item bank and linkage with GAD-7.

OBJECTIVE: To develop a calibrated item bank and computer adaptive test to assess anxiety symptoms in individuals with spinal cord injury (SCI), transform scores to the Patient Reported Outcomes Measurement Information System (PROMIS) metric, and create a statistical linkage with the Generalized Anxiety Disorder (GAD)-7, a widely used anxiety measure. DESIGN: Grounded-theory based qualitative item development methods; large-scale item calibration field testing; confirmatory factor analysis; graded response model item response theory analyses; statistical linking techniques to transform scores to a PROMIS metric; and linkage with the GAD-7. 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: Spinal Cord Injury-Quality of Life (SCI-QOL) Anxiety Item Bank RESULTS: Seven hundred sixteen individuals with traumatic SCI completed 38 items assessing anxiety, 17 of which were PROMIS items. After 13 items (including 2 PROMIS items) were removed, factor analyses confirmed unidimensionality. Item response theory analyses were used to estimate slopes and thresholds for the final 25 items (15 from PROMIS). The observed Pearson correlation between the SCI-QOL Anxiety and GAD-7 scores was 0.67. CONCLUSIONS: The SCI-QOL Anxiety item bank demonstrates excellent psychometric properties and is available as a computer adaptive test or short form for research and clinical applications. SCI-QOL Anxiety scores have been transformed to the PROMIS metric and we provide a method to link SCI-QOL Anxiety scores with those of the GAD-7.

Measuring depression after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Depression item bank and linkage with PHQ-9.

OBJECTIVE: To develop a calibrated spinal cord injury-quality of life (SCI-QOL) item bank, computer adaptive test (CAT), and short form to assess depressive symptoms experienced by individuals with SCI, transform scores to the Patient Reported Outcomes Measurement Information System (PROMIS) metric, and create a crosswalk to the Patient Health Questionnaire (PHQ)-9. DESIGN: We used grounded-theory based qualitative item development methods, large-scale item calibration field testing, confirmatory factor analysis, item response theory (IRT) analyses, and statistical linking techniques to transform scores to a PROMIS metric and to provide a crosswalk with the PHQ-9. 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: Spinal Cord Injury--Quality of Life (SCI-QOL) Depression Item Bank RESULTS: Individuals with SCI were involved in all phases of SCI-QOL development. A sample of 716 individuals with traumatic SCI completed 35 items assessing depression, 18 of which were PROMIS items. After removing 7 non-PROMIS items, factor analyses confirmed a unidimensional pool of items. We used a graded response IRT model to estimate slopes and thresholds for the 28 retained items. The SCI-QOL Depression measure correlated 0.76 with the PHQ-9. CONCLUSIONS: The SCI-QOL Depression item bank provides a reliable and sensitive measure of depressive symptoms with scores reported in terms of general population norms. We provide a crosswalk to the PHQ-9 to facilitate comparisons between measures. The item bank may be administered as a CAT or as a short form and is suitable for research and clinical applications.

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

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

Care partners' engagement in preventing falls for community-dwelling older people with dementia.

BACKGROUND AND OBJECTIVES: Little is known about how to prevent falls in community-dwelling older people with dementia. Although their care partners adopt various behaviors to prevent their falls, it is unclear if these behaviors reduce falls for those with different levels of fall risk. RESEARCH DESIGN AND METHODS: Linking the 2015 and 2016 National Health and Aging Trends Study (NHATS) and the 2015 National Study of Caregiving (NSOC), we identified 390 community-dwelling older people with dementia with 607 care partners. We selected 26 NSOC items representing fall risk management (FRM) behaviors. We examined the prevalence and dimensionality of these behaviors and investigated associations between care partners' behaviors in 2015 (T1) and older people's falls in 2016 (T2) stratified by their fall incidence at T1, adjusting for covariates. RESULTS: Five domains of FRM were identified: mobility and safety assistance, medical service coordination, health management, social service coordination, and accommodation. For those who did not fall at T1, mobility and safety assistance and social service coordination were each associated with an increased risk of falling at T2 (adjusted incidence rate ratio [aIRR]=1.39, 95% confidence interval [CI]=1.06-1.83, p=0.019, aIRR=1.25, 95% CI=1.01-1.55, p=0.043). For those who had fallen at T1, social service coordination was associated with a decreased risk of falling at T2 (aIRR=0.83, 95% CI=0.73-0.94, p=0.004). DISCUSSION AND IMPLICATIONS: The different impacts of dementia care partners' FRM behaviors emphasize the need to address specific behaviors when involving care partners in preventing falls for older people with dementia at varying levels of fall risk.

Psychometric characteristics of daily diaries for the Patient-Reported Outcomes Measurement Information System (PROMIS®): a preliminary investigation.

PURPOSE: The Patient-Reported Outcomes (PRO) Measurement Information System (PROMIS(®)) has developed assessment tools for numerous PROs, most using a 7-day recall format. We examined whether modifying the recall period for use in daily diary research would affect the psychometric characteristics of several PROMIS measures. METHODS: Daily versions of short-forms for three PROMIS domains (pain interference, fatigue, depression) were administered to a general population sample (n = 100) for 28 days. Analyses used multilevel item response theory (IRT) models. We examined differential item functioning (DIF) across recall periods by comparing the IRT parameters from the daily data with the PROMIS 7-day recall IRT parameters. Additionally, we examined whether the IRT parameters for day-to-day within-person changes are invariant to those for between-person (cross-sectional) differences in PROs. RESULTS: Dimensionality analyses of the daily data suggested a single dimension for each PRO domain, consistent with PROMIS instruments. One-third of the daily items showed uniform DIF when compared with PROMIS 7-day recall, but the impact of DIF on the scale level was minor. IRT parameters for within-person changes differed from between-person parameters for 3 depression items, which were more sensitive for measuring change than between-person differences, but not for pain interference and fatigue items. Notably, mean scores from daily diaries were significantly lower than the PROMIS 7-day recall norms. CONCLUSIONS: The results provide initial evidence supporting the adaptation of PROMIS measures for daily diary research. However, scores from daily diaries cannot be directly interpreted on PROMIS norms established for 7-day recall.

Development and validation of the positive affect and well-being scale for the neurology quality of life (Neuro-QOL) measurement system.

PURPOSE: To develop and validate an item-response theory-based patient-reported outcomes assessment tool of positive affect and well-being (PAW). This is part of a larger NINDS-funded study to develop a health-related quality of life measurement system across major neurological disorders, called Neuro-QOL. METHODS: Informed by a literature review and qualitative input from clinicians and patients, item pools were created to assess PAW concepts. Items were administered to a general population sample (N = 513) and a group of individuals with a variety of neurologic conditions (N = 581) for calibration and validation purposes, respectively. RESULTS: A 23-item calibrated bank and a 9-item short form of PAW was developed, reflecting components of positive affect, life satisfaction, or an overall sense of purpose and meaning. The Neuro-QOL PAW measure demonstrated sufficient unidimensionality and displayed good internal consistency, test-retest reliability, model fit, convergent and discriminant validity, and responsiveness. CONCLUSION: The Neuro-QOL PAW measure was designed to aid clinicians and researchers to better evaluate and understand the potential role of positive health processes for individuals with chronic neurological conditions. Further psychometric testing within and between neurological conditions, as well as testing in non-neurologic chronic diseases, will help evaluate the generalizability of this new tool.

The stigma scale for chronic illnesses 8-item version (SSCI-8): development, validation and use across neurological conditions.

BACKGROUND: Although the impact of stigma has been highlighted for epileptic populations, the experiences of people living with other neurological conditions have been less studied. PURPOSE: In order to promote research on stigma among people with neurological conditions, we sought to develop and psychometrically validate an eight-item questionnaire measuring internalised and enacted stigma experienced by people with epilepsy, multiple sclerosis (MS), Parkinson's disease (PD), stroke and amyotrophic lateral sclerosis (ALS). METHOD: We used item response theory methodologies to select items and field tested our items with 587 participants from eight academic medical centres across the USA. RESULTS: We conducted exploratory and confirmatory factor analysis as well as examined the scale's reliability and validity. In addition, we conducted an analysis of variance test to examine mean total score differences across the five neurological conditions. Data from people across conditions revealed that the shortened instrument conformed to an essentially unidimensional model of multifaceted stigma as a one-factor questionnaire with correlated residuals on a pair of items that distinctly measured internalised stigma. CONCLUSION: Preliminary evidence suggests that the Stigma Scale for Chronic Illness 8-item version fits a unidimensional model, which assesses enacted and internalised stigma, and has adequate internal consistency/reliability and validity in relation to psychological distress and patient performance. Our results suggest fairly low stigma for neurological populations. In addition, our results suggest that stigma may be more severe for patients with ALS relative to those with MS and PD. In the future, the SSCI-8 scale could be used practically in clinic settings to examine stigma without the patient burden associated with lengthier scales.

Defining the developmental parameters of temper loss in early childhood: implications for developmental psychopathology.

BACKGROUND: Temper modulation problems are both a hallmark of early childhood and a common mental health concern. Thus, characterizing specific behavioral manifestations of temper loss along a dimension from normative misbehaviors to clinically significant problems is an important step toward identifying clinical thresholds. METHODS: Parent-reported patterns of temper loss were delineated in a diverse community sample of preschoolers (n = 1,490). A developmentally sensitive questionnaire, the Multidimensional Assessment of Preschool Disruptive Behavior (MAP-DB), was used to assess temper loss in terms of tantrum features and anger regulation. Specific aims were: (a) document the normative distribution of temper loss in preschoolers from normative misbehaviors to clinically concerning temper loss behaviors, and test for sociodemographic differences; (b) use Item Response Theory (IRT) to model a Temper Loss dimension; and (c) examine associations of temper loss and concurrent emotional and behavioral problems. RESULTS: Across sociodemographic subgroups, a unidimensional Temper Loss model fit the data well. Nearly all (83.7%) preschoolers had tantrums sometimes but only 8.6% had daily tantrums. Normative misbehaviors occurred more frequently than clinically concerning temper loss behaviors. Milder behaviors tended to reflect frustration in expectable contexts, whereas clinically concerning problem indicators were unpredictable, prolonged, and/or destructive. In multivariate models, Temper Loss was associated with emotional and behavioral problems. CONCLUSIONS: Parent reports on a developmentally informed questionnaire, administered to a large and diverse sample, distinguished normative and problematic manifestations of preschool temper loss. A developmental, dimensional approach shows promise for elucidating the boundaries between normative early childhood temper loss and emergent psychopathology.