Second Phase of the Patient-Reported Outcomes Measurement Information System (PROMIS 2009–2013)

In October 2009, the National Institutes of Health awarded 15 new grants to further develop and test the Patient Reported Outcomes Measurement Information System (PROMIS). PROMIS aims to revolutionize the way patient reported outcome measures are selected and applied in clinical research and practice.

The PROMIS network will support a comprehensive, integrated approach to data collection, storage, and management and will consist of three administrative centers and 12 research sites. Research sites are divided between a focus on developing PROMIS measures for pediatric and adult populations. Funded research is focused on further validation of existing PROMIS measures, translations and testing of questionnaires in other languages, and development of new item banks measuring important outcomes.

Cancer relevant research is supported in the second phase with Drs. Moinpour and Potosky conducting validation of PROMIS instruments in multi-ethnic cancer populations using the Surveillance, Epidemiology, and End Results (SEER) program. Dr. Weinfurt will expand testing of the PROMIS sexual functioning measures in cancer and other chronic diseases. Dr. DeWalt will validate the original pediatric PROMIS measures in cancer populations as well. Dr. Stone will include cancer patients undergoing chemotherapy as part of a study to evaluate the seven-day recall period used in PROMIS.

Awarded PROMIS Sites

PROMIS Research Sites

• Joan E. Broderick, Ph.D., and Arthur A. Stone, Ph.D., Stony Brook University; Ecological Validity of PROMIS Instruments.
• Heidi M. Crane, M.D., M.P.H., Paul K. Crane, M.D., M.P.H., and Donald L. Patrick, Ph.D., University of Washington, Seattle; Patient Reported Outcomes in routine clinical care of patients infected with HIV.
• Darren A. Dewalt, M.D., University of North Carolina, Chapel Hill, N.C.; PROMIS Pediatrics: Longitudinal Validation and Linking Pediatric and Adult Item Banks.
• Christopher Forrest, M.D., Ph.D., Children’s Hospital of Philadelphia, Philadelphia; Pediatric PROMIS: Advancing the Measurement and Conceptualization of Child Health.
• James F. Fries, M.D., Stanford University, Stanford, Calif.; Improving Assessment of Physical Function and Drug Safety in Health and Disease.
• Stephen M. Haley, Ph.D., Boston University, Boston, and David Scott Tulsky, Ph.D., Kessler Research Center, West Orange, N.J.; PROS (Patient Reported Outcomes) for Children and Young Adults with Disabilities.
• Dinesh Khanna, M.D., and Brennan Spiegel, M.D., M.S.H.S., University of California, Los Angeles; Development and Initial Validation of PROMIS GI Distress Scale.
• Carol M. Moinpour, Ph.D., Fred Hutchinson Cancer Research Center, Seattle, and Arnold L. Potosky, Ph.D., Georgetown University, Washington, D.C.; Validation of PROMIS in Diverse Cancer Populations.
• Esi M. Morgan Dewitt, M.D., Children’s Hospital Medical Center, Cincinnati; Enhancing PROMIS in Pediatric Pain, Rheumatology, and Rehabilitation Research.
• Paul A. Pilkonis, Ph.D., University of Pittsburgh, Pittsburgh; Validation and domain development in mental health and sleep-wake function.
• Lisa M. Shulman, M.D., University of Maryland, Baltimore; Development and Validation of a Self-Efficacy Item Bank.
• Kevin P. Weinfurt, Ph.D., Duke University, Durham, N.C.; Validating and Extending the PROMIS Sexual Function Measure for Clinical Research.

PROMIS Administrative Centers

• PROMIS Statistical Center: David F. Cella, Ph.D., Northwestern University, Chicago, Ill.
• PROMIS Technology Center: Richard C. Gershon, Ph.D., Northwestern University, Chicago, Ill.
• PROMIS Network Center: Susan D. Keller, Ph.D., American Institutes for Research, Washington, D.C.