Disablement Model and Health-Related Quality of Life Classification for Patient-Reported Outcomes Measurement Information System (PROMIS) Instruments

Context: The National Institutes of Health created a medical research road map that included the development of the Patient-Reported Outcomes Measurement Information System (PROMIS). A key feature of PROMIS was the development of patient-reported outcome measures (PROs) addressing various aspects of health. Understanding disablement dimensions and health-related quality-of-life (HRQOL) domains captured through PROMIS measures will help with instrument selection. Objective: To evaluate the pediatric PROMIS PROs and determine the areas of disablement and HRQOL captured within each instrument. Design: Descriptive laboratory study. Setting: Laboratory. Patients or Other Participants: Twenty-two pediatric PROMIS instruments (19 short forms and 3 profiles). Main Outcome Measure(s): Three raters independently reviewed the PROMIS instruments and categorized each question on each instrument according to the World Health Organization's International Classification of Functioning, Disability, and Health disablement model domains (body functions and structures, activity, participation, environmental factors, personal factors) and HRQOL (psychological, physical, social, spiritual, economic) dimensions. A consensus process determined the final question category. The frequencies of disablement model domains and HRQOL dimensions captured by questions on PROMIS instruments were reported. Results: The most frequently reported disablement model domain was body function and structure, which was captured by questions in 16/22 (73%) pediatric PROMIS instruments, followed by activity (13/22 [59%] pediatric PROMIS instruments) and participation (9/22 [41%] pediatric PROMIS instruments). The most frequently captured HRQOL dimensions were physical and psychological health, both evaluated in 13/22 (59%) of the pediatric PROMIS instruments. The social dimension of HRQOL was assessed in 9/22 (41%) of the pediatric PROMIS instruments. Conclusions: Pediatric PROMIS fixed-length instruments captured a variety of disablement domains and health dimensions, but, like most PRO instruments, no single PROMIS instrument captured them all. Clinicians and researchers must consider their goals when selecting PRO instruments, which may require implementing multiple instruments and those beyond PROMIS.