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The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative

Overview of attention for article published in Health and Quality of Life Outcomes, January 2013
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Title
The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative
Published in
Health and Quality of Life Outcomes, January 2013
DOI 10.1186/1477-7525-11-210
Pubmed ID
Authors

Jordi Alonso, Susan J Bartlett, Matthias Rose, Neil K Aaronson, John E Chaplin, Fabio Efficace, Alain Leplège, Aiping LU, David S Tulsky, Hein Raat, Ulrike Ravens-Sieberer, Dennis Revicki, Caroline B Terwee, Jose M Valderas, David Cella, Christopher B Forrest

Abstract

Patient-reported outcomes (PROs) play an increasingly important role in clinical practice and research. Modern psychometric methods such as item response theory (IRT) enable the creation of item banks that support fixed-length forms as well as computerized adaptive testing (CAT), often resulting in improved measurement precision and responsiveness. Here we describe and discuss the case for developing an international core set of PROs building from the US PROMIS® network.PROMIS is a U.S.-based cooperative group of research sites and centers of excellence convened to develop and standardize PRO measures across studies and settings. If extended to a global collaboration, PROMIS has the potential to transform PRO measurement by creating a shared, unifying terminology and metric for reporting of common symptoms and functional life domains. Extending a common set of standardized PRO measures to the international community offers great potential for improving patient-centered research, clinical trials reporting, population monitoring, and health care worldwide. Benefits of such standardization include the possibility of: international syntheses (such as meta-analyses) of research findings; international population monitoring and policy development; health services administrators and planners access to relevant information on the populations they serve; better assessment and monitoring of patients by providers; and improved shared decision making.The goal of the current PROMIS International initiative is to ensure that item banks are translated and culturally adapted for use in adults and children in as many countries as possible. The process includes 3 key steps: translation/cultural adaptation, calibration, and validation. A universal translation, an approach focusing on commonalities, rather than differences across versions developed in regions or countries speaking the same language, is proposed to ensure conceptual equivalence for all items. International item calibration using nationally representative samples of adults and children within countries is essential to demonstrate that all items possess expected strong measurement properties. Finally, it is important to demonstrate that the PROMIS measures are valid, reliable and responsive to change when used in an international context.IRT item banking will allow for tailoring within countries and facilitate growth and evolution of PROs through contributions from the international measurement community. A number of opportunities and challenges of international development of PROs item banks are discussed.

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Mendeley readers

The data shown below were compiled from readership statistics for 173 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 2 1%
Spain 2 1%
Portugal 1 <1%
Uruguay 1 <1%
Germany 1 <1%
Netherlands 1 <1%
Japan 1 <1%
Unknown 164 95%

Demographic breakdown

Readers by professional status Count As %
Researcher 40 23%
Student > Ph. D. Student 28 16%
Student > Master 27 16%
Other 14 8%
Student > Bachelor 12 7%
Other 36 21%
Unknown 16 9%
Readers by discipline Count As %
Medicine and Dentistry 67 39%
Psychology 26 15%
Nursing and Health Professions 20 12%
Social Sciences 10 6%
Business, Management and Accounting 4 2%
Other 21 12%
Unknown 25 14%

Attention Score in Context

This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 16 January 2014.
All research outputs
#17,262,626
of 21,358,488 outputs
Outputs from Health and Quality of Life Outcomes
#1,616
of 2,106 outputs
Outputs of similar age
#226,742
of 304,606 outputs
Outputs of similar age from Health and Quality of Life Outcomes
#58
of 79 outputs
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We're also able to compare this research output to 79 others from the same source and published within six weeks on either side of this one. This one is in the 11th percentile – i.e., 11% of its contemporaries scored the same or lower than it.