title: Measurement considerations for achieving equity in research inclusion for transition-aged youth with disabilities.
abstract: Measuring health for youth with intellectual disabilities (ID) is important for tracking progress toward national health goals. Measures of biophysical and fitness indicators are important but difficult to obtain in youth with ID, particularly in community settings. This paper describes obstacles encountered and strategies used to measure outcomes in a community-based study. Proposed best practices include adaptations in procedures to maximize comprehension; preparation of the environment to provide privacy and predictability; and appropriately sized equipment to obtain accurate readings. Reliable and valid measures, specific to youth with ID, would improve promote research inclusion and reduce health disparities for this population.
authors.affiliation: Division of Occupational Therapy, University of Utah, Salt Lake City, UT. Electronic address: beth.cardell@hsc.utah.edu.
authors.forename: Beth
authors.initials: B
authors.lastname: Cardell
authors.affiliation: College of Nursing, University of Utah, Salt Lake City, UT.
authors.forename: Lauren
authors.initials: L
authors.lastname: Clark
authors.affiliation: College of Nursing, University of Utah, Salt Lake City, UT.
authors.forename: Marjorie A
authors.initials: MA
authors.lastname: Pett
mesh_terms: D000293:Adolescent; D035843:Biomedical Research / Q000458:organization & administration*; D002648:Child; D019988:Children with Disabilities / Q000706:statistics & numerical data*; D005260:Female; D000069576:Health Equity / Q000706:statistics & numerical data*; D054624:Health Status Disparities; D006801:Humans; D008297:Male; D020380:Needs Assessment; D018579:Patient Selection; D019989:Persons with Intellectual Disabilities / Q000706:statistics & numerical data*; D011788:Quality of Life; D060305:Transition to Adult Care; D055815:Young Adult
keywords: Community-based; Health disparities; Healthy lifestyles; Measurement; Transition-aged youth