BACKGROUND: This paper describes the cultural adaptation, translation, and psychometric validation procedures that were used to make PROMIS items accessible in American Sign Language (ASL) and culturally relevant to deaf/hard of hearing (DHH) adults' experiences. We used the standard procedures developed at the U.S. National Center for Health Statistics Cognitive Survey Laboratory to culturally adapt and translate Patient Reported Outcomes Measurement Information System (PROMIS) items to ASL. The team consisted of primarily deaf, hard of hearing, and hearing investigators, with involvement of an advisory committee and ASL translation experts. An iterative process was used for all translations. Psychometric methods included extensive psychometric analyses, as recommended in PROMIS’ guidelines and standards for measure development and evaluation. Psychometric sample criteria included being DHH at birth or before 13 years old, using ASL in daily communication, and having moderate to profound loss in both ears. We used multiple recruitment methods to invite participants from the DHH community across the USA, including Hawaii and Alaska. Data collection occurred from April 2016 to April 2018.
RESULTS: Some items from PROMIS item bank, particularly within social health domain, required cultural adaptation for use with DHH people. A separate item bank for Communication Health was created, reflecting DHH-specific quality of life outcomes. Our psychometric study sample was composed of N=1,354 participants (Mean age=42; SD=16). Just over half (57%) were female, and 65% were White. More than half the sample (62%) were born DHH, with 71.5% reporting severe or profound hearing loss. About 45% of the sample preferred using ASL as their primary language, and 42% did not have a college degree. Test—retest reliability, internal consistency, and clinical sensitivity were strong and in the predicted direction.
CONCLUSIONS: The present study is perhaps the largest study of its kind in DHH individuals who were born deaf or became deaf prior to 13 years old. Major strengths of the PROMIS-Deaf Profile are its accessibility in ASL, suitability for use across diverse DHH subgroups, and key dimensions of communication health and early life communication experiences that are important aspects of a DHH person’s quality of life and health outcomes.