The National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS): a view from the UK

Abstract

Jonathan P Evans,1 Alexander Smith,2 Chris Gibbons,3 Jordi Alonso,4–6 Jose M Valderas1 1Health Services and Policy Research Group, University of Exeter Medical School, Exeter, UK; 2Aneurin Bevan University Health Board, Clinical Research and Innovation Centre, St Woolos Hospital, Newport, UK; 3Patient-Reported Outcomes, Value and Experience (PROVE) Center Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA; 4IMIM-Hospital del Mar Medical Research Institute, Barcelona, Spain; 5Pompeu Fabra University (UPF), Barcelona, Spain; 6CIBER en Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain Abstract: The interest in patient-reported outcome measures (PROMs) continues to increase as recognition of their potential utility rises in an effort to make health systems more patient-centered. The US National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System® (PROMIS®) has used state of the art psychometric and statistical techniques to create a universal PROMs language, with potential application across the whole spectrum of health conditions, languages, and geographic locations. PROMIS offers a versatile platform where specific health domains are assessed using both standardized short forms and computerized adaptive tests, which are automatically tailored to individual patients. The scores of each health domain or a standardized profile of multiple domains are all scored on a common metric scale. PROMIS is increasingly recognized as the international gold standard for patient-centered assessment, although the use of these tools in the UK is limited. In this review, the developmental methodology of the PROMIS is described with discussion of its relevant strengths and limitations for use in the UK. We provide a case study of the largest application of the PROMIS tools in the UK as an example of straightforward integration into health-care research. Barriers to the uptake of PROMIS in the UK include the technology requirement, measurement tradition, and lack of a clear understanding of its benefits, and although potential stakeholders should cautiously consider its use, its impressive potential and increasing international utilization should be recognized. Keywords: outcomes, patient reported outcomes, quality of life, health-related quality of life, PROMIS

Keywords

• Outcomes
• patient reported outcomes
• quality of life
• health-related quality of life
• PROMIS