NIH Study Seeks to Improve Quality-of-Life Measure for the Deaf and Hard-of-Hearing

In the U.S. alone, 30 million people over the age of 12 experience hearing loss in both ears (nidcd.nih.gov). To learn more about the needs and experiences of this population, UALR’s Dr. Samuel Atcherson, Associate Professor of Audiology, has partnered with Dr. Poorna Kushalnagar of the Rochester Institute of Technology (RIT) and Dr. David Cella of Feinberg School of Medicine at Northwestern University to standardize and validate a self-report survey for deaf and hard-of-hearing individuals.

Funded by a $395,543 research grant, a post-BA diversity supplement in Year 1, and an additional $1,303,510 anticipated over the next four years from the National Institutes of Health (NIH), the project, “PROMIS-Deaf: Inclusion of Deaf Patients in Disability and Outcomes Research,” is led by Dr. Kushalnagar at RIT. Drs. Atcherson and Cella have both received subawards to support their roles in the research; Dr. Atcherson’s subaward is funded at $16,938 for the first year of the project, with an additional $71,116 anticipated over the next four years.

The researchers are basing their survey, which will be available in both English and American Sign Language (ASL), on the existing Patient Reported Outcomes Measurement Information System (PROMIS), overseen by Dr. Cella at Northwestern University. They hope that the results of the new PROMIS-Deaf Profile will provide enriching insight into the global, mental, physical, social, and communication quality of life experienced by deaf and hard-of-hearing individuals in the United States.

According to the NIH, PROMIS consists of “highly reliable, precise measures of patient-reported health status for physical, mental, and social well-being” (nihpromis.org). Commonly used in clinical studies, PROMIS can give researchers and physicians valuable insight into a patient’s response to treatments, as well as general insight into individuals’ qualities of life. This new project will seek to make this tool accessible and directly relevant to the deaf and hard-of-hearing population by tailoring it to their situations, experiences, and needs.

Dr. Atcherson’s portion of the project will involve creating a Communication Health domain for the PROMIS-Deaf profile, participating in the cultural adaptation of the PROMIS items for deaf and hard-of-hearing users of accessible technology and services, recruiting and surveying 250 individuals with different degrees of hearing loss, and helping analyze and disseminate the final results of the project. Participants will range in age from 18 to 65+. The surveys will take place at the UALR Speech and Hearing Clinic and surrounding region.

To find out more about the project, you can visit the project’s website.

“Research reported in this press release was supported by the National Institute on Deafness and Other Communication Disorders of the National Institutes of Health under award number R01-DC014463-01 and 3R01DC014463-01A1S1.”

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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