Adapting the NIH Toolbox to Help People Living with Disabilities Participate in Health Research
Many people with disabilities are excluded from participating in health care research because a disability is often one of the exclusion criteria. In addition, tests and surveys used in research may not been adapted for the needs of participants living with disabilities. For example, the NIH Toolbox is a set of standard, brief tests or surveys that measure cognitive, emotional, motor, and sensory function in people ranging from 3 to 85 years of age. However, the NIH Toolbox has not been adapted to individuals living with disabilities and the goal of this project was to evaluate and adapt the NIH Toolbox so that it can be relevant for people living with traumatic brain injury (TBI), spinal cord injury (SCI), and stroke. Ten participants living with each condition (i.e., TBI, SPI, or stroke) participated in this study. Participants completed the NIH Toolbox measures while being observed and researchers documented their experiences and barriers to usability. After completing each measure, participants were interviewed about their experiences and opinions.
Findings indicated that participants were able to complete the majority of the NIH Toolbox measures and reported generally favorable experiences. However, some design features affected participants’ performance and the subsequent interpretation of results. Measures could be categorized into five broad groups based on their accessibility and ability to be implemented with accommodations. These groups included measures that: (1) are inappropriate for participants with specific functional deficits (e.g., a vision test is not meaningful for an individual who is blind even if the task could be completed), (2) are inaccessible for participants with specific functional deficits, (3) can be made accessible with reasonable accommodations in a nonstandard administration, (4) can be made accessible with reasonable accommodations in a standard administration, (5) can be completed by individuals with disabilities but in a way that was not intended by the developers (and thus invalidates the measure). Findings from this work were presented to experts in the NIH Toolbox project and to the technology team and resulted in modifications to improve accessibility and usability. The investigators also developed a reasonable accommodations guidelines manual to be used by Toolbox administrators.