July 7, 2020
Patient-Reported Outcome Assessments: Spotlight on the QOL General (QGEN®) 1-Minute Alternative to SF-36 September 30, 2020 9AM ET In this webinar, Dr.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 other 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 general QOL domains, QGEN items increase the range of measurement enough to reduce ceiling effects for the dual purposes of monitoring group outcomes and screening for individual levels of functional health and well-being requiring more measurement. Presenters: Dr. John E. Ware is an internationally recognized expert in patient-reported outcomes (PROs) and an elected member of the National Academy of Medicine . He led the development of 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 launched and led International Quality of Life Assessment Project translations of the SF-36 for use in multinational clinical trials and population health surveys. His current focus is on more practical and integrated general and disease-specific PROs. Marie-Pierre Emery has been working in the field of Patient-Reported Outcomes (PRO) and Clinical Outcome Assessments (COA) within the non-profit Mapi Research Trust for over 25 years. Marie-Pierre has developed and contributed to the success of all PRO and COA information activities at Mapi Research […]
March 19, 2019
October 17-18, 2019 | Pacifico Yokohama, Kanagawa, Japan Dr. Ware will return to Japan for plenary presentations at the 34th Annual Orthopaedic Research Meeting organized by The Japanese Orthopaedic Association (JOA) at Pacifico Yokohama, Yokohama, Kanagawa, Japan, October 17-18, 2019. Dr. Ware’s presentation entitled “QGEN-10: A more efficient generic quality of life short-form for measuring SF-36 profile and summary scores” will describe a much-improved single-item-per-domain Quality of Life General (QGEN) short-form developed in the US for surveying patients and the general population. QGEN was developed by Dr. Ware and his colleagues as a more efficient (more valid, less burden) replacement of the widely-used SF-36 Health Survey also developed by Dr. Ware. Dr. Ware will also make a presentation entitled, “Quality of Life Disease Impact Scale (QDIS) surveys: The first disease-specific quality of life impact scale to standardize the measurement of multimorbidity across chronic conditions.” QDIS uses disease-specific attributions to increase responsiveness to one condition in the presence of multimorbidity, while also allowing impact on QOL to be compared across diseases and aggregated into a total impact score. For all disease conditions, measures are scored using the same metric and are interpreted using norms for the US chronically-ill population. With other panel participants, Dr. Ware will discuss how the shortest-possible QDIS and QGEN patient-reported outcome measures can be integrated using software that automatically adapts patient surveys to the presence of multiple chronic conditions in the US.
September 10, 2018
September 29th – October 26th, 2018 | Kyoto, Sapporo, Tokyo, Isehara, and Nara City in Japan Dr. Ware will present a series of lectures at conferences and university medical schools in September and October. Lectures begin with a September 29 plenary keynote entitled “Patient-reported Health Measures are Linking Treatment Outcomes to Population Health” at the Society for Clinical Epidemiology annual meeting in Kyoto followed by a September 30 lecture on new JWRG disease-specific and generic health-related quality of life measures translated for use in population surveys and clinical research in Japan. New surveys include a 10-item quality of life (QOL) short-form (QGEN®) developed in the US as an improvement over the SF-36® Health Survey and being normed in Japan, and a new 7-item QOL Disease-specific Impact Scale (QDIS®) that uses disease-specific attributions to increase validity and responsiveness to one condition in the presence of multiple comorbid conditions. Dr. Ware also will comment on the history of conceptualization and measurement of QOL and important new survey tools and computerized adaptive test (CAT) developments in Japan, US and elsewhere at the Kyoto meeting and in subsequent lectures at Hokkaido University in Sapporo (October 3), Tokai University in Isehara (October 19), Kyoto University (October 22), and a symposium entitled “Consider QOL for Diabetes Patients” at the Ligare Kasugano hotel in Nara City (October 26) sponsored by MSD K.K. These lectures will cover the more than 40-year evolution of conceptualizing and measuring patient-reported outcomes (PROs) and noteworthy milestones. Advances include: applications of item response […]
September 10, 2018
September 24th-26th, 2018 | 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 24-26 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 conceptualizing patient-reported outcomes (PROs), as well as the most innovative and important methodological advances. The latter include: applications of item response theory (IRT) and waves of development of very homogeneous item banks that require increasing the number of generic PRO scales; contrasting efforts to develop summary measures that each cover a wider range; new “super” short-form items that improve psychometric performance over legacy tools; and standardized IRT-based metrics common to new and legacy generic PROs. A new generation of more valid and responsive disease-specific PROs will be discussed. These new methods, which are standardized across diseases and norm-based, yield a summary score that fills the gap between disease-specific symptoms that are not QOL and generic QOL measures that are not disease-specific. A new kind of adaptive survey logic that automatically adapts to the presence of multiple conditions will be discussed as a more practical solution to integrating disease-specific and generic measures into a common “dashboard” of PROs.
March 7, 2018
March 7, 2018 | Integrated Health Care Conference, Arizona State University Doctor of Behavioral Health Program, Scottsdale, AZ In a keynote lecture, Dr. Ware provided an overview of the history of the conceptualization and measurement of patient-reported outcomes (PROs), and noteworthy methodological advances and their implications for going forward. Applications of item response theory (IRT) methods have improved the quantification of health-related quality of life (QOL) domains and are the basis for more efficient computerized adaptive test (CAT) survey administrations and scoring. However, a consequence of the development of very homogeneous survey item banks preferred by IRT models is a conceptual shift favoring measures of very specific symptoms (e.g., depression) and activities (e.g., walking) as opposed to broader concepts of mental, physical and social functioning and well-being. In contrast, an emphasis on summary measures – the “tips of the QOL icebergs” that enable more efficient adaptive approaches – makes it practical to drill down to measure specific limitations in QOL only when are more likely to occur and to adapt automatically to multiple chronic conditions when they are present. This adaptive approach is the most practical and useful way represent PROs in “big data.” Dr. Ware presented examples of published and forthcoming JWRG findings from evaluations of new generic “super” short-form items that improve survey efficiency over legacy tools and use standardized IRT-based metrics to cross-calibrate new and legacy PROs. New, more valid and responsive disease-specific PROs were also discussed. The latter QOL Disease Impact Scale (QDIS) measures, which are standardized across diseases and […]