Patient-Reported Outcomes Assessments

In this webinar, the featured speaker, John Ware, developer of the SF-36, explains how the new 1-minute QGEN survey was developed and evaluated as a more efficient alternative to common SF-36, PROMIS and SF-8 measures and how it was normed in a U.S probability sample of adults in 2020. Findings show that, while maintaining equivalent validity and average scores for common domains, QGEN items increase the range of measurement enough to reduce ceiling effects for the dual purposes of monitoring group outcomes and screening for low levels of functional health and well-being.

Who should attend?

This webinar will appeal to all healthcare professionals, clinical researchers and personnel at pharmaceutical companies interested in patient-reported outcomes and quality of life.

What you will learn:

By joining this free webinar, attendees will:

Observe historical trends in the content and scoring of widely used PRO measures
Become familiar with the three approaches used to improving QGEN items and response categories that increased efficiency and reduced ceiling effects
Understand how QGEN content and metrics were standardized to enable general population and disease-specific group comparisons with results equivalent to longer legacy measures
Become informed regarding practical aspects of QGEN dissemination by Mapi Research Trust for scholarly and commercial purposes

Presenters:

John E. Ware, Jr., PhD, Chief Science Officer, John Ware Research Group, Research Professor, Department of Medicine, Tufts University School of Medicine & Visiting Professor, College of Health Solutions, Arizona State University

Dr. John E. Ware is an internationally recognized expert in PRO and an elected member of the National Academy of Medicine (formerly Institute of Medicine). He led the development of the outcome measures used in the RAND Health Insurance Experiment, served as the principal investigator for the Medical Outcomes Study where he developed the SF-36® Health Survey and led International Quality of Life Assessment Project translations of the SF-36 for use in multinational clinical trials and population health surveys, which have grown to more than 150 languages. In the 1990s, Dr. Ware was among the first to apply “modern” psychometric methods and computerized adaptive testing to generic and disease-specific measures to cross-calibrate health care outcomes and population health and estimate scores more efficiently. He founded Quality Metric to develop web-based PROs and served as its CEO and CSO for 10 years.

Dr. Ware has published more than 450 peer-reviewed articles on the accuracy and validity of PROs in capturing outcomes and predicting the costs of healthcare, job loss and mortality. His current work focuses on the integration of disease-specific and generic PROs using improved adaptive survey logic to make routine patient screening and outcomes monitoring more practical and more useful in clinical research and practice.

Marie-Pierre Emery, MSc, Senior Project Manager, Author Collaborations Unit, Mapi Research Trust.

Marie-Pierre Emery has been working in the field of (PRO) and Clinical Outcome Assessments (COA) within the non-profit Mapi Research Trust for over 25 years

Leading a team of 25 people in her positions of operations director and associate director of Mapi Research Trust, she developed and contributed to the success of all PRO and COA information activities, including the creation of online databases of PRO and COA instruments (PROQOLID), of PRO and COA claims granted by health authorities in the US and Europe (PROLABELS), PRO and COA information searches and targeted literature reviews and the management and international distribution of over 500 PROs and COAs and their derivatives such as translations and electronic versions, on behalf of their authors and copyright holders. Beside human resources and team management (recruitment/integration/annual performance evaluation), her responsibilities also covered finances/budget, organization, business development, strategy, marketing/communication, project management, continuous improvement of resources and processes and quality assurance.

Today, Marie-Pierre uses her 25-year experience and her privileged relationship with numerous actors in the fields of PROs and COAs, to establish collaborative agreements with authors and copyright holders of instruments and contribute to the centralization, dissemination and exponential use of PROs and COAs in clinical research and practice worldwide, for the ultimate benefit of the patients.