August 20, 2017
August 25th – 28th, 2013 | Montreal, Canada Including the patient’s voice in measuring risks and benefits was the topic of the plenary presentation by Dr. Ware and others at the 29th International Conference on Pharmacoepidemiology and Therapeutic Risk Management, Montreal Convention Center, Montreal, Canada on August 25th, 2013. The goal of the presentations was to present new initiatives to better understand the patient’s voice regarding the safety and effectiveness of pharmaceutical products in real world use. Dr. Ware opened the session with a presentation entitled “Improving Disease-specific and Generic Patient-reported Outcome (PRO) Measures to Better Capture the Beneficial and Adverse Effects of Pharmaceutical Therapies” in which a comprehensive endpoint model was applied to both validating PROs and evaluating treatment PRO benefits. Included was an example of the construct (convergent-discriminant) validation of the Quality of Life Disease Impact Scale (QDIS®), a new approach to standardizing both the content and scoring of the QOL impact attributed to specific conditions. More information can be found here.
August 20, 2017
August 15th – 17th, 2016 | Harvard School of Public Health, Boston, MA Dr. Ware presented his annual lecture entitled “New Techniques for Health Outcomes Measurement and Evaluation” at the Measurement, Design, and Analysis Methods for Health Outcomes Research course held from August 15-17 at the Harvard School of Public Health. The lecture covered noteworthy milestones in the history of patient-reported outcomes (PROs) as well as some of the most innovative and important recent conceptual and methodological advances. The latter included standardized metrics for the domains measured by legacy generic PROs and a new generation of standardized disease-specific PROs that use disease-specific QOL impact attributions to fill the gap between disease-specific symptoms that are not QOL and generic QOL measures that are not disease-specific. In the afternoon workshop, entitled “Integrating Generic and Disease-Specific Assessments: What Are the Issues and the Solutions?” Dr. Ware discussed how PRO profiles and profiles across specific diseases can be integrated and compared and how the content of disease-specific and generic QOL impact measures can be standardized across diseases to enable the first disease-specific aggregation of QOL impact across multiple chronic conditions and the first norm-based scoring of disease-specific measures for the chronically-ill population. Case studies from early adoptions of these advances in academic medical center applications and clinical trials were discussed.
August 20, 2017
October 23nd, 2015 | 22nd Annual Meeting of the International Society for Quality of Life Research (ISOQOL), Vancouver, British Columbia, Canada Dr. Ware presented “Cutting Edge Solutions to Improving the Efficiency of PRO Measurement: From Real-Data Simulations to Pilot Testing Before and After Total Joint Replacement in a National Registry,” a paper co-authored with Barbara Gandek from John Ware Research Group (JWRG) and the University of Massachusetts Medical School (UMMS), Worcester, MA and Patricia Franklin and Celeste Lemay from UMMS. The pilot test was a real-world implementation of the QOLIX® monitoring system, which integrates and standardizes generic and disease-specific patient-reported outcomes (PRO) measures. At the core of this new approach is the Quality of Life Disease Impact Scale (QDIS®) developed by JWRG to fill the gap between disease-specific symptoms that do not measure quality of life (QOL) and generic PRO measures that are not disease-specific. Previous studies comparing QDIS with legacy (SF-12® Health Survey, SF-36® Health Survey) measures have shown that QDIS is markedly more valid in discriminating differences in disease severity and standardized QDIS content and scoring enables the first individualized aggregate index of QOL burden across multiple conditions. Simulation studies had also shown that computer adaptive methods could make reliable assessments much more practical. This pilot test in an ongoing surgical registry demonstrated that the advantages of the QDIS can be practically achieved on the Internet from clinic or home and suggests that a very brief QDIS overall comorbidity impact estimate may be useful in explaining variations in […]