PROMIS-deaf profile measure: cultural adaptation and psychometric validation in American sign language

Background The Patient Reported Outcomes Measurement Information System® (PROMIS®) is a structured collection of self-report measures that assess symptoms, functioning, and perceptions of health across a multidimensional spectrum of quality of life. PROMIS® instruments have been widely used in clinical research and practice [1–4]. In many applications of patient-reported outcome measurement, a combination of generic and targeted (e.g., disease-specific) measures is used, enabling comparable information across all groups measured while also capturing important and salient aspects of health status that might be specific to individual patient groups. Many PROMIS® instruments have been translated to other languages [5–8], using an iterative process of forward and back translation, independent reviews by bilingual experts, and pretesting on a population with characteristics similar to the target population [9]. There are currently over 2000 active research studies using PROMIS®. To date, however, PROMIS® instruments have not been available in American Sign Language (ASL) and have not been tested for validity in deaf and hard of hearing (DHH) adult populations. This is a medically underserved population that not only uses ASL but also has cultural values that are different from the mainstream. Factors that contribute to perceived DHH-specific quality of life outcomes have been found to differ from contributing factors associated with generic quality of life outcomes [10]. For this reason, patient-reported outcome measures should not only include generic but also DHH-specific items that assess a DHH person’s overall statuses and outcomes. This paper describes the cultural adaptation, translation, test-retest administration, and psychometric methods used to make existing PROMIS® items and new communication items applicable to DHH people. We refer to this as the PROMIS®-Deaf Profile. We expect this measure to demonstrate that study participants with high Global Health status (better overall health) would have, on average, better PROMIS®-Deaf Profile domainspecific health status than those with low Global Health status (worse overall health).