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

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, Neil K. Aaronson, Jakob BjØrner, John Brazier, Helena CorreiaJocelyne M.R. Clench-Aas, Fabio Efficace, Pedro L. Ferreira, Francis Guillemin, Madelaine King, Alain Leplège, L. U. Aiping, David S. Tulsky, Hein Raat, Ulrika Ravens-Sieberer, Dennis Revicki, Matthias Rose, Henrica De Vet, Jose M. Valderas, Christopher B. Forrest

*Corresponding author for this work

Research output: Contribution to journalComment/debatepeer-review

79 Scopus citations

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.

Original languageEnglish (US)
Article number210
JournalHealth and Quality of Life Outcomes
Volume11
Issue number1
DOIs
StatePublished - Dec 20 2013

Keywords

  • Clinical decision making
  • Comparative effectiveness research
  • Cross-cultural equivalence
  • Cross-national comparisons
  • Health information systems
  • Health-related quality of life research
  • Patient empowerment
  • Patient-reported outcomes
  • Patients' experiences
  • Questionnaires

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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