Clarifying thresholds for defining levels of physical function and pain interference using bookmarking in orthopaedics.

Purpose: Bookmarking is a qualitative method used to assign descriptive labels to ranges of patient-reported outcome (PROM) scores. We aimed to evaluate variability between bookmarking samples and test score ranges where there was variability in expert opinion in previous studies.

Methods: We conducted two bookmarking sessions with patients who experienced orthopaedic fractures (n = 11) and one session with orthopaedic clinicians (n = 10).

A comparison of scoring algorithms for the NIH Toolbox executive function tasks in a U.S. norming sample.

Executive function (EF) has been extensively linked to various behavioral, clinical, and educational outcomes. There have been, however, few systematic investigations into how best to score EF tasks using speed and accuracy performance, particularly how to generate a summary and norm-referenced score. Using data from an updated norming study for the NIH Toolbox Version 3 (NIHTB V3) with the general U.

Assessing Communication Impairments in a Rare Neurodevelopmental Disorder: The Clinical Trials Readiness Study.

Background And Objectives: -related disorders (-RDs) entail severe impairments in multiple domains that could serve as nonseizure outcomes in clinical trials. This study evaluated the fitness for purpose of several clinical instruments with both standardized and alternative scoring and with some measures used out of their intended age range for assessing communication in -affected participants.

Methods: Parents of -affected children were recruited through FamilieSCN2A Foundation outreach for a combined cross-sectional and longitudinal study.

Validity and reliability of the Mobile Toolbox Faces and Names memory test.

Validation of the Mobile Toolbox Faces and Names associative memory test is presented. Ninety-two participants self-administered Faces and Names in-person; 956 self-administered Faces and Names remotely but took convergent measures in person; and 123 self-administered Faces and Names remotely twice, 14 days apart. Internal consistency (.

Mobile toolbox (MTB) remote measures of executive function and processing speed: development and validation.

Objective: The ability to remotely monitor cognitive skills is increasing with the ubiquity of smartphones. The Mobile Toolbox (MTB) is a new measurement system that includes measures assessing Executive Functioning (EF) and Processing Speed (PS): Arrow Matching, Shape-Color Sorting, and Number-Symbol Match. The purpose of this study was to assess their psychometric properties.

Developmental associations between cognition and adaptive behavior in intellectual and developmental disability.

Background: Intellectual and developmental disabilities (IDDs) are associated with both cognitive challenges and difficulties in conceptual, social, and practical areas of living, commonly referred to as adaptive behavior (DSM-5). Although cross-sectional associations between intelligence or cognition and adaptive behavior have been reported in IDD populations, no study to date has examined whether developmental changes in cognition contribute to or track with changes in adaptive behavior. The present study sought to examine associations of longitudinal developmental change in domains of cognition (NIH Toolbox Cognition Battery, NIHTB-CB) and adaptive behavior domains (Vineland Adaptive Behavior Scales-3; VABS-3) including Socialization, Communication, and Daily Living Skills (DLS) over a two year period in a large sample of children, adolescents and young adults with IDD.

Development and validation of an episodic memory measure in the Mobile Toolbox (MTB): Arranging Pictures.

Introduction: Arranging Pictures is a new episodic memory test based on the NIH Toolbox (NIHTB) Picture Sequence Memory measure and optimized for self-administration on a personal smartphone within the Mobile Toolbox (MTB). We describe evidence from three distinct validation studies.

Method: In Study 1, 92 participants self-administered Arranging Pictures on study-provided smartphones in the lab and were administered external measures of similar and dissimilar constructs by trained examiners to assess validity under controlled circumstances.

Measurement Invariance in Intellectual and Developmental Disability Research.

Measurement invariance (MI) is a psychometric property of an instrument indicating the degree to which scores from an instrument are comparable across groups. In recent years, there has been a marked uptick in publications using MI in intellectual and developmental disability (IDD) samples. Our goal here is to provide an overview of why MI is important to IDD researchers and to describe some challenges to evaluating it, with an eye towards nudging our subfield into a more thoughtful and measured interpretation of studies using MI.

Prediction of cognitive impairment using higher order item response theory and machine learning models.

Timely detection of cognitive impairment (CI) is critical for the wellbeing of elderly individuals. The MyCog assessment employs two validated iPad-based measures from the NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox). These measures assess pivotal cognitive domains: Picture Sequence Memory (PSM) for episodic memory and Dimensional Change Card Sort Test (DCCS) for cognitive flexibility.

Development and Validation of a Vocabulary Measure in the Mobile Toolbox.

Objective: We describe the development of a new computer adaptive vocabulary test, Mobile Toolbox (MTB) Word Meaning, and validity evidence from 3 studies.

Method: Word Meaning was designed to be a multiple-choice synonym test optimized for self-administration on a personal smartphone. The items were first calibrated online in a sample of 7,525 participants to create the computer-adaptive test algorithm for the Word Meaning measure within the MTB app.

The Crohn's Disease-Health Index: Development and Evaluation of a Novel Outcome Measure.

Objective: We sought to develop and validate the Crohn's Disease-Health Index (CD-HI), a disease-specific, patient-reported outcome measure that serially measures Crohn's disease (CD) symptomatic burden in adults with CD.

Background: As therapeutic interventions are tested among patients with CD, responsive outcome measures are needed to track disease progression and therapeutic gain during clinical trials.

Patients And Methods: We conducted a national cross-sectional study of individuals with CD to identify the most prevalent and impactful symptoms of CD.

Developmental Associations between Cognition and Adaptive Behavior in Intellectual and Developmental Disability.

Background: Intellectual and developmental disabilities (IDDs) are associated with both cognitive challenges and difficulties in conceptual, social, and practical areas of living (DSM-5). Individuals with IDD often present with an intellectual disability in addition to a developmental disability such as autism or Down syndrome. Those with IDD may present with deficits in intellectual functioning as well as adaptive functioning that interfere with independence and living skills.

Patient-Reported Impact of Symptoms in Fibromyalgia (PRISM-FM).

Objective: To identify the frequency and relative importance of symptoms experienced by adults with fibromyalgia (FM) and determine factors associated with a higher disease burden.

Methods: We conducted semistructured interviews with 15 participants with FM, collecting 1479 quotes regarding the symptomatic burden of FM. We then performed an international cross-sectional study involving 1085 participants with FM to determine the prevalence and relative importance (scale 0-4) of 149 symptoms representing 14 symptomatic themes.

Using the Mobile Toolbox in child and adolescent samples: A feasibility study.

Cognitive research with developmental samples requires improved methods that support large-scale, diverse, and open science. This paper offers initial evidence to support the Mobile Toolbox (MTB), a self-administered remote smartphone-based cognitive battery, in youth populations, from a pilot sample of 99 children (M = 11.79 years; 36% female; 53% White, 33% Black or African American, 9% Asian, and 15% Hispanic).

A psychometric evaluation of the NIH Toolbox fluid cognition tests adapted for Swahili and Dholuo languages in Kenyan children and adolescents.

Objective: Our objective was to evaluate the psychometric properties of the culturally adapted NIH Toolbox African Languages® when used in Swahili and Dholuo-speaking children in western Kenya.

Method: Swahili-speaking participants were recruited from Eldoret and Dholuo-speaking participants from Ajigo; all were <14 years of age and enrolled in primary school. Participants completed a demographics questionnaire and five fluid cognition tests of the NIH Toolbox® African Languages program, including Flanker, Dimensional Change Card Sort (DCCS), Picture Sequence Memory, Pattern Comparison, and List Sorting tests.

What is typical: Atypical in young children's attention regulation?: Characterizing the developmental spectrum with the Multidimensional Assessment Profiles-Attention Regulation Infant-Toddler (MAPS-AR-IT) Scale.

While attention dysregulation is a promising early indicator of neurodevelopmental risk, in particular attention-deficit/hyperactivity disorder (ADHD), it is difficult to characterize clinical concern due to its developmental expectability at the transition to toddlerhood. Thus, explicating the typical:atypical continuum of risk indicators is among the key future directions for research to promote early identification and intervention, and prevent decrements in the attainment of developmental milestones into early childhood. In this paper, we present the Multidimensional Assessment Profiles-Attention Regulation Infant-Toddler (MAPS-AR-IT) Scale, a novel parent-report survey of dimensional, developmentally specified indicators of attention (dys)regulation.

Codesign of remote data collection for chronic management of pediatric home mechanical ventilation.

Introduction: Outpatient monitoring of children using invasive home mechanical ventilation (IHMV) is recommended, but access to care can be difficult. This study tested if remote (home-based) data collection was feasible and acceptable in chronic IHMV management.

Methods: A codesign study was conducted with an IHMV program, home nurses, and English- and Spanish-speaking parent-guardians of children using IHMV (0-17 years; n = 19).