A new approach to improving patient-reported disease-specific quality of life measures: shorter, more clinically valid and standardized across conditions.
Traditional patient-reported outcomes (PRO) assessments provide sponsors with critical information about changes to quality of life (QOL). However, not all surveys are standardized across conditions and there is room to improve clinical validity. Efforts to improve PRO assessments could potentially lead to better clinical outcomes.
There is a new approach to improving PRO disease-specific quality of life measures known as the Quality of Life Disease Impact Scale (QDIS®). This is a family of disease-specific QOL impact forms with content expanded to be as comprehensive as the best generic QOL surveys in terms of domain representation.
In this free webinar, the featured speaker will discuss how QDIS forms differ from generic surveys by using disease-specific attributions proven to increase validity and responsiveness in relation to disease severity or change in severity of a specific disease or condition. QDIS is the first such survey with content and scoring standardized across chronic conditions and normed in the US chronically ill population (mean=50, SD=10) to enable norm-based interpretation. Because QOL impact scores are standardized across multiple chronic conditions (MCC), QDIS output also includes the first individualized disease-specific QOL impact profile and the first aggregate multiple chronic conditions (MCC) total QOL impact score. Now available are multiple static single- and multi-item short QDIS forms and computerized adaptive test forms that meet the requirements of different measurement objectives.
Speakers
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 medical care outcomes and population health and estimate scores more efficiently. He founded QualityMetric 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 medical care outcomes and PROs as among the best predictors of 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 patient screening and outcomes monitoring more practical and more useful in clinical research and practice.
Message Presenter
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.
Message PresenterWho 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
- Appreciate what makes disease-specific and generic (general) QOL measures different and their practical implications
- Become familiar with the psychometric methods of QDIS construction that are the basis of a summary score and use of more practical computerized adaptive test methods.
- Understand how QDIS content and metrics were standardized across the general population and in disease-specific applications and how alternate QDIS forms satisfy their different requirements
- Review empirical evidence demonstrating gains in clinical validity, including responsiveness, using QDIS in comparison with legacy generic and disease-specific measures
- Become informed regarding practical aspects of QDIS dissemination by Mapi Research Trust for scholarly and commercial purposes
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Mapi Research Trust
Mapi Research Trust is the official licensor and distributor of over 500 COAs, on behalf of their developers and copyright owners. Please visit our catalog to access the complete list of COAs managed by Mapi Research Trust, or visit our website for additional information on our services to developers and copyright owners.
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