PROMIS-Deaf Profile: Inclusion of Deaf Patients in Disability and Outcomes Research

Brief abstract of the project We plan to: (a) include community members and patients who are DHH to assist with translation of English items to ASL, (b) recruit 500 DHH adults to complete quality of life measures in ASL, (c) assess psychometric properties of these measures, and (d) examine the impacts of early and current communicative stress on current fatigue and perceived quality of life. Specific Functions of Northwestern University A central goal of this subcontract is to develop and validate patient-reported outcome (PRO) instruments for use with deaf and hard of hearing patients who use American Sign Language (ASL) and English. This will require the psychometric analysis of adapted PRO items to assess the reliability and validity of the items in this new population. The psychometric methods will be modeled on those set forth in the NIH Patient Reported Outcomes Measurement Information System (PROMIS) and NIH Toolbox projects, including the assessment of unidimensionality (using both confirmatory and exploratory approaches), as well as the application of item response theory (IRT). Northwestern University will provide guidance on the cross-cultural adaptation methods for PROMIS items, oversee the integration and maintenance of video-based ASL items in PROMIS system, and ensure that modern psychometric theory approaches are applied to validate adult quality of life-DHH instrument and PROMIS items in ASL. Specific tasks include the following: • Years 1-5: Drs. Cella (all years) and Schalet (Yrs 2-4) will participate in monthly PI phone conference. A quarterly written report on project activity shall be sent to the study PI (Dr. Kushalnagar). The last quarterly report for the assigned year shall be sent by end of Month 11 to allow time for the study PI to organize and merge information for the annual report to NIH. • Year 1: Dr. Cella will review and provide consultation on the cross-cultural adaptation procedure that has been used to translate PROMIS items to other languages. • Year 2: Dr. Schalet will review and assist with research design for preparation of data management. • Year 3: Dr. Schalet will conduct preliminary psychometric analyses on PROMIS-Deaf data gathered to date. • Year 4: Dr. Schalet will conduct analyses on the full dataset, and provide a final report. This report shall include but is not limited to psychometric manual for the PROMIS-Deaf profile, summary of descriptive statistics for the deaf and hard of hearing study sample, and interpretation of within- and between-group analyses on PROMIS Global Health, Physical, Mental, Social, and FACIT data. • Year 5: Dr. Cella will participate in co-authoring manuscripts for journal publication.