Patient Reported Outcomes Measurement Information System (PROMIS®) is a system of highly reliable, valid, flexible, precise, and responsive measures of patient–reported health status for physical, mental, and social well–being. To learn more about PROMIS, visit www.nihpromis.org.

PROMIS tools measure what patients are able to do and how they feel by asking questions. PROMIS measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment, and PROMIS tools can be used across a wide variety of chronic diseases and conditions and in the general population. The PROMIS initiative, which began in 2004, is funded by the National Institutes of Health (NIH) in the United States.

PROMIS International involves activities conducted by US PROMIS researchers and PROMIS international partners. Dr. Istvan Mucsi from Semmelweis University and University of Toronto is the lead representative on the Hungarian PROMIS National Center (PNC).

PROMIS in Hungary

The PROMIS-57 (also includes shorter versions: PROMIS-43 and PROMIS-29) and the PROMIS-29+2 profile instrument has been translated by a multidisciplinary team. For instructions to access them, please contact us at contact@promishungary.org. The questionnaire is currently being validated in patients with chronic kidney disease and in patients with spine problems. It has also been used in pregnant women to assess health related quality of life. The research group lead by Dr. Fanni Rencz, Associate Professor of the Department of Health Economics at the Corvinus University is currently conducting the analysis of data obtained in a nationally representative study, enrolling 1700 participants. The primary objective of this study is to assess the general health related quality of life of the Hungarian population using the PROMIS-29+2 questionnaire. The analysis will also yield national normative values for the PROMIS 29+2 instrument

Recently the PROMIS-Preference (PROPr) score has been developed as a summary score for the PROMIS instruments. PROPr is a preference-based scoring system for seven PROMIS domains. It serves as a generic, societal, preference-based summary scoring system of health-related quality of life. It overcomes several limitations of the most widely used generic preference-based measures, including the EuroQol-5D (EQ- 5D) and Health Utilities Index . The PROPr now provides the possibility of simultaneously collecting both health profile and preference-based scores and to quantify health-related quality of life for a variety of uses, including calculating aggregated indices of morbidity and mortality such as QALYs in health economic analyses.

The national representative for Promis Hungary is Dr. Istvan Mucsi, Associate Professor of Medicine, University of Toronto and Staff Nephrologist, University Health Network, Toronto.
He has a strong interest in psychosocial outcomes of solid organ transplantation, quality of life studies and patient reported outcome measures. Currently his team is validating tools developed by the NIH-PROMIS program among solid organ transplant recipients and among patients on dialysis. The medium-term goal of this program is to build an electronic platform, that includes tools using computer adaptive testing developed by the NIH-PROMIS project to systematically assess Patient Reported Outcome Measures. Additionally, they are developing best practice guidance based clinical care pathways to better manage physical and emotional symptoms of patients on dialysis and solid organ transplant recipients.