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October 20, 2017 | 24th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Philadelphia, Pennsylvania Because all surveys begin with the first item, at the core of advances in patient-reported outcome measurement are better single-item measures of the most frequently-measured health domains. For many outcomes monitoring and cost prediction purposes in the future, the shortest health survey forms will administer only the best single item for each domain. Also, because the first item determines what happens next in adaptive surveys, more efficient single-item measurement is crucial. At the 24th Annual ISOQOL Conference, Drs. Ware and Gandek summarized advances in understanding of the content that best represents health domains and the implications of better operational definitions for capturing the essence of each domain, focusing on the Physical Function, Vitality and Mental Health domains. Survey items were self-administered on the Internet to representative samples of U.S. adults (N=2,938), ages 18-94. Results for new General Quality of Life (QGEN®) 10-item form items were compared with SF-36 and PROMIS-29 items for the same domains and in terms of how well they predicted SF-36 physical and mental component summary measures, to identify the reasons for superior item performance. Multiple psychometric criteria and tests of convergent and discriminant validity were reported. They reported that the best single-item measures were not found within the Medical Outcomes Study SF-36 or PROMIS-29 multiple-item scales or global items from those projects. Significant improvements in QGEN single-item performance, in comparison with SF-36 and PROMIS-29 for the same […]

September 25th-27th, 2017 | Harvard School of Public Health,Boston, MA Dr. Ware will present 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 September 25-27 at the Harvard School of Public Health. The lecture will cover the 40-year evolution of survey content and 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 include new features of items shown to improve their performance over legacy items, standardized underlying metrics for the domains common to most legacy generic PROs, and a new generation of standardized disease-specific PROs that 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 “The How and Why of Integrating Disease-Specific and Generic Patient-Reported Outcome Measures (PROMS)”, Dr. Ware will discuss the use of QOL impact attributions to specific diseases to improve the validity and responsiveness of disease-specific measures, how improved measures can be integrated and compared in a profile that can be standardized across diseases, and the first norm-based scoring for disease-specific measures for the chronically-ill population.  Case studies from early adoptions of these advances in academic medical center applications and clinical trials will be discussed. 

October 24-27, 2012 | Budapest, Hungary Dr. Ware presented a paper entitled “Evaluation of a More Comprehensive Survey Item Bank for Standardizing Disease-Specific Impact Comparisons across Chronic Conditions”, at the ISOQOL Annual Conference. The paper presented a new Quality of Life Disease Impact Scale (QDIS®) developed by JWRG to fill the gap between widely-used disease-specific and generic patient-reported outcomes (PRO) measures. Preliminary evaluations of QDIS psychometric properties and empirical validity were reported. QDIS metrics standardized across conditions were shown to be sound psychometrically and valid. Combined with norm-based scoring and an integrated “dashboard” display, QDIS allows for easier interpretation of both disease-specific and generic health outcome measures. Tests of the usefulness of such combined information in clinical research and practice are warranted. In addition, Dr. Ware’s afternoon workshop at ISOQOL addressed “Integrating and Improving Generic and Disease-Specific Assessments.” Objectives included showing how both the content and scoring of disease-specific QOL impact measures can be standardized, how to evaluate improvements in QOL impact survey efficiency, and how reduced respondent burden can be achieved without sacrificing reliability and validity.

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 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.