With a $1.6 million dollar grant from the National Institutes of Health, researchers are developing a tool that will be able to assess health-related quality-of-life outcomes in people who are deaf or hard of hearing, with a goal of improving their overall health.
Called the PROMIS-Deaf Profile, the tool provides a way to capture self-reported measures of symptoms, concerns, and issues relevant to this population.
Led by Poorna Kushalnagar, PhD, associate research professor in the Chester F. Carlson Center for Imaging Science at Rochester Institute of Technology in Rochester, N.Y., in collaboration with researchers from Northwestern University, the University of Arkansas at Little Rock, and Gallaudet University, the team will adapt the standard Patient Reported Outcome Measurement Information System (PROMIS) tool to use in clinical outcomes research to represent the experiences of deaf and hard of hearing people.
The researchers plan to survey more than 650 adults to collect data related to global health, mental health, physical health, social health, and communication health, said Dr. Kushalnagar. Currently, the researchers are validating the PROMIS-ASL measures with adult signers, and in late 2017 will begin using the English version of PROMIS with nonsigners.
Dr. Kushalnagar emphasized that the tool can be self-administered online and will include items culturally adapted for users of accessible services and technology. For example, she said that the term “listen” used in existing PROMIS items was changed to “pay attention” in the PROMIS-Deaf tool to apply to deaf and hard of hearing adults who do not wear cochlear implants or hearing aids.
“We also added new PROMIS items that are specific to the experience of deaf and hard of hearing adults, which cannot be captured in a generic PROMIS measure,” she said. “The customized PROMIS product will be tested for clinical significance within the deaf and hard of hearing patient population.”