Measurement Considerations for Achieving Equity in Research Inclusion for Transition-Aged Youth with Disabilities

- Youth with disabilities can successfully participate in health research.
- Simple changes to materials, instructions, and research context promote inclusion.
- Development of population specific, standardized measures and equipment are needed.

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.