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August 20, 2017
October 20th, 2016 | 23rd Annual Conference of the International Society for Quality of Life Research (ISOQOL), Copenhagen, Denmark Dr. Ware presented an address entitled “From Populations to Patients: Progress, Challenges and Solutions for Better Understanding Health Outcomes” in the opening plenary of the 23rd Annual ISOQOL Conference. He provided his perspectives on advances made in the health-related quality of life (HRQOL) measurement field over the past few decades, the major challenges in the field today, and potential conceptual, methodological and technical solutions for these challenges. Dr. Ware also participated in a session in which he and other senior researchers gave advice to new researchers on successful strategies for dealing with challenges in their research and career paths. In addition, he took part in a roundtable discussion on the pros and cons of disease-specific and generic HRQOL measures. JWRG’s Director of Research, Barbara Gandek, also gave a presentation entitled “Can the Accuracy of Generic Health Outcome Predictions Be Improved Using Individualized Disease-Specific QOL Impact Scales?” at the conference. This presentation compared the accuracy of alternative approaches to measuring total disease impact among heterogeneous populations with multiple chronic conditions. Advances in this area are particularly important for improving case-mix adjustment when generic HRQOL measures are used in observational studies. More information about the ISOQOL conference can be found here.
August 20, 2017
December 2nd, 2013 | Bethesda, MD Dr. Ware presented the annual lecture "Quality of Life Update – 2013” for the "Introduction to the Principles and Practice of Clinical Research" course offered by the National Institutes of Health on December 3rd. This was Dr. Ware's 15th IPPCR lecture; it focused on the advantages of integrating disease-specific and generic patient reported outcome (PRO) measures while using norm-based scoring to interpret both types of PRO measures. Plans for forthcoming NIH Clinical and Translational Science Award (CTSA) network presentations are intended to create a "Virtual University" that will include the Clinical Center’s core clinical research curriculum. More information on the NIH course can be found here.
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 […]
June 1, 2016
WATERTOWN, MA, JUNE 1, 2016 – JWRG’s multi-year effort to broaden the content of disease-specific health-related quality of life (QOL) measurement with a briefer scale standardized and scored in relation to norms for the chronically ill US population has been documented in an article about the Quality of life Disease Impact Scale (QDIS®), published in Health and Quality of Life Outcomes. QDIS is a suite of disease-specific measures, including a 25-item bank which can be used in computerized adaptive testing, a 7-item fixed-length short form and a global QOL item, each of which estimates a summary QOL disease impact score. The content of QDIS questions is standardized across conditions, but questions vary in their disease-specific attribution. For example, a QDIS question for chronic kidney disease might ask “How much did your kidney disease limit your everyday activities or your quality of life?”, while the same question also might be asked with attribution to asthma. Scores on both the kidney disease impact and asthma impact measures are interpreted in relation to general population norms. By standardizing the content and scoring of disease-specific measures across conditions, QDIS provides a new approach to measurement, one that combines the precision and discrimination of disease-specific measures with the comprehensiveness and standardization of generic QOL measures which are not specific to any disease or treatment. Crucial assumptions underlying the QDIS approach were evaluated favorably in the Health and Quality of Life Outcomes article, which documents the development of QDIS and Internet administration of QDIS items with attribution […]
January 8, 2016
WORCESTER, MA, January 8, 2016 — Researchers at UMass Medical School and JWRG have published results that open up a new pathway to disease-specific quality of life (QOL) impact measurement, as reported in a special issue of International Journal of Statistics in Medical Research (IJSMR) on methods for estimating treatment effects for persons with multiple chronic conditions (MCC). This study, sponsored by the Agency for Healthcare Research and Quality (AHRQ), evaluated alternative approaches to measuring disease-specific impact across people who reported MCC. Results demonstrated the feasibility of JWRG’s new approach to individualized disease impact measurement The QOL Disease-specific Impact Scale (QDIS®), which standardizes content and scoring across diseases, is central to JWRG’s new measurement approach. Previous research has shown that calculating a single QDIS impact score across multiple QOL content areas was justified, that standardization of QDIS content and scoring across diseases was psychometrically sound, and that QDIS administration was practical (10-15 seconds per patient per disease). The following question remained: are QOL impact attributions to a specific disease valid in the presence of multiple chronic conditions? Although disease attribution often is addressed in single-disease studies, this question has rarely been examined in the presence of MCC. In the IJSMR study, the validity of responses to multiple disease-specific measures (symptoms, severity ratings, QDIS ratings) was tested in 4,480 US adults, all of whom were known to have a pre-identified condition. Respondents also provided information on disease severity and QDIS disease impact for every comorbid condition (out of 35) they […]