Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2018 Oct 24:9:345-352.
doi: 10.2147/PROM.S141378. eCollection 2018.

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

Jonathan P Evans  1 , Alexander Smith  2 , Chris Gibbons  3 , Jordi Alonso  4   5   6 , Jose M Valderas  1
Affiliations
Review

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

Jonathan P Evans et al. Patient Relat Outcome Meas. .

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: PROMIS; health-related quality of life; outcomes; patient reported outcomes; quality of life.

PubMed Disclaimer

Conflict of interest statement

Disclosure JA, CG, and JMV are members of the PROMIS Health Orga-nization. CG and JMV are PROMIS representatives in the UK. The authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
PROMIS® health domains for adult and pediatric populations. Notes: Reproduced from HealthMeasures. Introduction to PROMIS®. Available from: http://www.healthmeasures.net/images/Introduction_to_PROMIS_082318.pptx. © 2008– 2018. Reprinted with permission, PROMIS Health Organization. PROMIS is a registered trademark of HHS. Abbreviation: PROMIS, Patient-Reported Outcomes Measurement Information System.
Figure 2
Figure 2
Example of a computerized adaptive test output. Notes: T-score represented as dots (with error bars) on colored map. A score of 50 denotes an average population score based on a US population sample.
See this image and copyright information in PMC

References

    1. Kerr EA, Hayward RA. Patient-centered performance management: enhancing value for patients and health care systems. JAMA. 2013;310(2):137–138. - PMC - PubMed
    1. Black N, Burke L, Forrest CB, et al. Patient-reported outcomes: pathways to better health, better services, and better societies. Qual Life Res. 2016;25(5):1103–1112. - PubMed
    1. Valderas JM, Alonso J. Patient reported outcome measures: a model-based classification system for research and clinical practice. Qual Life Res. 2008;17(9):1125–1135. - PubMed
    1. Greenhalgh J, Dalkin S, Gibbons E, et al. How do aggregated patient-reported outcome measures data stimulate health care improvement? A realist synthesis. J Health Serv Res Policy. 2018;23(1):57–65. - PMC - PubMed
    1. Porter I, Gonçalves-Bradley D, Ricci-Cabello I, et al. Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities. J Comp Eff Res. 2016;5(5):507–519. - PubMed