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Research Ethics and Intellectual Disability
Published in Joel Michael Reynolds, Christine Wieseler, The Disability Bioethics Reader, 2022
Accommodating PWIDs may require more complex adjustments. By nature of their impairments, PWIDs will confront difficulties in understanding the particulars of medical terminology and procedures. Assuring that these limitations do not interfere with a person’s participation in the research process requires thoughtfulness on the part of researchers, IRBs, and representatives. To illustrate, Rebecca H. Shields et al. have developed a series of adaptations for PWIDs whose cognitive functions are assessed through the NIH Toolbox Cognitive Battery, a series of electronic standardized assessments meant to measure intellectual abilities across clinical trials. The aim of these adjustments is to ensure that the assessments accurately measure how PWIDs respond to interventions meant to improve their cognitive function (Shields et al. 2020). These measures include modifying assessments so that they match a participant’s developmental age or explaining testing procedures with pictures. We suggest that researchers could provide similarly thoughtful accommodations in recruiting PWIDs for general health research.
Outcome Measures
Published in Barbara A. Wilson, Jill Winegardner, Caroline M. van Heugten, Tamara Ownsworth, Neuropsychological Rehabilitation, 2017
The Neuro-QOL measurement system is another tool from the NIH toolbox that provides a clinically relevant and psychometrically robust health-related quality of life (HRQL) assessment tool for both adults and children with common neurological disorders. The Neuro-QOL measurement system provides item banks and short forms that enable PRO measurement in neurological research (Gershon et al., 2012). Neuro-QOL is now available for different domains, such as positive affect and well-being (Salsman et al., 2013) and different aetiologies, such as epilepsy (Victorson et al., 2014), and is available in different languages, such as Spanish (Correia et al., 2015).
Introduction
Published in Steven P. Reise, Dennis A. Revicki, Handbook of Item Response Theory Modeling, 2014
Steven P. Reise, Dennis A. Revicki
The National Institutes of Health (NIH) Patient Reported Outcome Measurement Information System (PROMIS®), for example, has developed multiple item banks for measuring various physical, mental, and social health domains (Cella et al., 2007; Cella et al., 2010). Similarly, the Quality of Life in Neurological Disorders (www.neuroqol.org) and NIH Toolbox (www.nihtoolbox.org) have also employed IRT methods of scale development and item analysis. One of the chief motivations underlying the application of IRT methods in these projects was to solve a long-standing and well-recognized problem in health outcomes research; namely, that for any important construct, there are typically half a dozen or so competing measures of unknown quality and questionable validity. This chaotic measurement situation, with dozens of researchers studying the same phenomena using different measurement tools, fails to promote good research and inhibits the cumulative aggregation of research results.
Validity and reliability of the NIH Toolbox® Standing Balance Test As compared to the Biodex Balance System SD
Published in Physiotherapy Theory and Practice, 2023
Alexander Peller, Rishi Garib, Emily Garbe, Daniel Komforti, Chett Joffe, Adonis Magras, Ashleigh Trapuzzano, Matt S. Stock, Nicole T. Dawson
The NIH Toolbox® is an application-based software system using an iPad as the center for data collection. The app measures four domains: cognition, sensation, motor, and emotion. The motor domain of the NIH Toolbox® includes a measure of the participants’ standing balance in similar static positions as the m-CTSIB with the addition of a tandem stance. The NIH Toolbox® was designed and tested by over 300 scientists from over 100 academic institutions as part of the National Institute of Health Blueprint for Neuroscience Research to provide clinicians and researchers a cost-effective and portable tool (National Institute of Health, 2016). A systematic review of the literature was conducted for each domain to identify appropriate content for the measures. Each individual measure underwent content validity testing using a panel of experts for each domain and content area. Certain tools required additional concurrent validity testing against established criterion standards (Bohannon and Magasi, 2015; Rine et al., 2012; Zelazo et al., 2014). Finally, each tool underwent validation testing for the general population as well as specific populations. These results are publicly available on the NIH Toolbox® webpage (National Institute of Health, 2016). However, no studies have examined the reliability and validity of the NIH Toolbox® Standing Balance Test against established balance measurement tools such as Biodex Balance System SD.
Motor demands of cognitive testing may artificially reduce executive function scores in individuals with spinal cord injury
Published in The Journal of Spinal Cord Medicine, 2021
Jinhyun Lee, Shauna Dudley-Javoroski, Richard K. Shields
The National Institutes of Health Toolbox for Neurological and Behavioral Function – Cognition Battery (NIH Toolbox) is a computerized testing platform designed to enable standardized assessment of cognitive function.15,16 It has been validated for use in populations with neurologic impairment, including SCI.17 Participants complete the Toolbox assessment via an iPad app that requires them to reach forward from a standardized start position to press a button on a keyboard. Several Toolbox test instruments have a reaction time scoring vector, which superimposes a motor demand upon the cognitive task. Respondents with trunk or upper extremity motor impairment may take longer to respond to test items than participants without motor impairment. A number of groups, including the developers of NIH Toolbox, have proposed accommodations for participants with SCI such as avoiding tests with reaction-time scoring vectors,18 statistical correction for hand function,13 or simply accepting a high test non-completion rate (∼40%) for participants with tetraplegia.13 None of these approaches provides a satisfactory way to test speed-based components of cognition in participants with trunk and upper extremity impairment.
Beyond the Bayley: Neurocognitive Assessments of Development During Infancy and Toddlerhood
Published in Developmental Neuropsychology, 2019
Natalie H. Brito, William P. Fifer, Dima Amso, Rachel Barr, Martha Ann Bell, Susan Calkins, Albert Flynn, Hawley E. Montgomery-Downs, Lisa M. Oakes, John E. Richards, Larissa M. Samuelson, John Colombo
The NIH Toolbox Early Childhood Cognition Battery was designed to provide a brief, efficient computerized test of key neuropsychological function for young children ages 3–6 years. The tests include: Dimensional Change Card Sort (DCCS; cognitive flexibility), Flanker Inhibitory Control and Attention, Pattern Comparison Processing Speed, Picture Sequence Memory (episodic memory), and the Picture Vocabulary (receptive vocabulary and language). In addition to individual task scores, the battery will yield an Early Childhood Composite Score as a general measure of early cognitive function (Weintraub et al., 2013; Zelazo et al., 2013). The NIH Toolbox is not, however, without its limitations. As part of a validation study, the Cognition Battery was administered to a sample of 1,020 typically developing children (ages 3–20 years) tested at 9 sites across the United States (Pediatric Imaging Neurocognition and Genetics, Akshoomoff et al., 2014). The researchers observed some ceiling effects in older children and some floor effects on the EF tasks in the younger participants. Specifically, the NIH Toolbox version of the DCCS was reported to be significantly limited in its use for measuring cognitive flexibility in children under the age of 7 and a small percentage of children were unable to meet the practice trial criteria for the Flanker Inhibitory Control and Attention Test (Akshoomoff et al., 2014). As all NIH Toolbox assessments are administered using a computer or touchscreen monitor, the child’s proficiency in media use must be taken into consideration when evaluating reaction time or attention performance.