DOI: 10.3886/e186781v1
title: OSU RRTC NIDILRR Study 1b - Can You Hear Me Now? Listening to People with Intellectual and Developmental Disabilities in Health Research

description: The purpose of Study 1: Measures is to adapt and refine current measures on mental health, physical health, and general well-being and quality of life for adults (18+) with Intellectual and Developmental Disabilities (IDD) in order to increase their health outcomes and participation in health research. The adaptations being made are designed to enhance the cognitive accessibility of these measures for persons with IDD so that they are more understandable and accessible to adults with IDD. These adaptations will also allow for greater utility across research and clinical settings, thereby producing measures that are more relevant to adults with IDD and allow for greater self-report and inclusion of this population in health research.<br><br>There is an urgent need for development and validation of cognitively accessible measures of mental and physical health and well-being in order to help individuals with IDD be more active participants in health care research and participate in their own health care. We have identified three key areas of need regarding development and validation of cognitively accessible instruments: mental health, health-related quality of life (HRQL), and physical health. This project will work to select, adapt, and validate cognitively accessible self-report measures in each of these three areas. <br><br>Study Objective (Study 1b): 1) Conduct a validity and reliability study for the modified DIAAID by piloting the revised measure with 50 adults with IDD and their caregivers/support persons (N=100 study participants) in order to establish preliminary validity and reliability psychometrics on the adapted measure. 2) Field test modified versions of Function Neutral Health-Related Quality of Life (FuNHRQOL) self-report survey and PROMIS (Patient Reported Outcomes Measurement Information System) Profile self-report survey with the same 50 adults with IDD and their caregivers/support persons (N=100 study participants). 3) This objective pertains to the same 50 dyads (dyad = adult with IDD + caregiver) (N=100) of study participants and is threefold: a) Administer a standardized measure of intelligence to adults with IDD (Wechsler Abbreviated Scale of Intelligence - Second Edition) (WASI-2) and a standardized measure of adaptive behavior to caregivers/support persons (Adaptive Behavior Assessment System - Third Edition) (ABAS-3) in order to confirm an intellectual disability (ID) diagnosis, b) administer a Demographic Survey to caregivers in order to collect general medical and mental health histories of the adult with IDD, and c) Administer a Proxy Neurocognitive Disorders Screening to caregiver/support person in instances when the adult with IDD is 40+ years of age in order to rule out dementia in adult with IDD as a confound for determining validity of the DIAAID instrument. 5) Complete retest with half of the sample (N=50) to determine the reliability of the DIAAID instrument and the modified FuNHRQOL and PROMIS surveys. <br>
description: N/A
description: Presence of Common Scales: The adapted FuNHRQL) PROMIS scales used 3-point Likert scale ("Almost Never," "Sometimes," "Almost Always")
description: Convenience sampling through local networks such as on site clinics and county boards of developmental disabilities.
description: Adults with intellectual disability<br>Caregivers of adults with intellectual disability . Smallest Geographic Unit: State
description: face-to-face interview; on-site questionnaire; paper and pencil interview (PAPI); telephone interview; web-based survey; The following grant funding acknowledgement should appear with every publication: <br><br>The contents of this (insert type of publication; e.g., article, presentation, book) were developed as part of a Rehabilitation Research and Training Center (RRTC) on Health and Function awarded to The Ohio State University (OSU) Nisonger Center through a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RTHF0002-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (DHHS). The contents of this (insert type of publication; e.g., article, presentation, book) do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government