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February 9, 2015

QOLIX joint replacement registry field test shows practical advantages of integrating disease-specific and generic PROs

WORCESTER, MA, February 10, 2015 – A national registry recently conducted a field test to collect patient-reported outcomes (PRO) data using a new method.  Patients logged on from home or the clinic to complete the survey, as is typical for web-based assessments, before and after total joint replacement (TJR).  The difference was in what happened next.  The survey used the Quality of Life (QOL) Information System (QOLIX®) which uses a powerful new adaptive survey logic (ASLX®) to automatically adapt to the presence of multiple comorbid conditions while also estimating outcomes with metrics equivalent to those underlying widely-used legacy PROs.  Although each of the major elements of QOLIX, including standardized disease-specific (QDIS®) and generic (QGEN®) modules, and the power of ASLX had been evaluated successfully in real data simulations, this was the first real-world test of the entire system in an ongoing PRO registry.  Despite collecting more comprehensive and more individualized information, QOLIX surveys were faster in the TJR field test for most patients in comparison with state-of-the-art PRO surveys that were administered in parallel. The Function and Outcomes Research for Comparative Effectiveness in TJR (FORCE-TJR) registry is sponsored by AHRQ and led by a team of researchers at UMass Medical School in cooperation with a national network of surgeons.  FORCE-TJR goes beyond traditional approaches to comparative effectiveness research (CER) that are based on retrospective analyses of rates of implant failure or revision.  The FORCE-TJR model is patient-centered, more comprehensive, and integrates population-based sampling and prospective monitoring of functional health and […]
January 29, 2015

QOL Disease Impact Scale (QDIS) standardized scores agree nearly perfectly with study-specific scores in independent test of acute coronary syndrome patients

WORCESTER, MA, January 29, 2015 — JWRG’s pursuit of disease-specific QOL measurement innovation appears to be on the right track toward filling the gap between disease-specific measures that do not measure QOL and QOL measures that are not disease-specific.   Studies conducted during the development of the Quality of Life Disease Impact Scale (QDIS®) showed that it differs from widely-used disease-specific measures in a number of important ways.  First, QDIS increases disease-specific QOL content representation enough to be on a par with widely-used generic QOL measures. At the same time, QDIS provides a single overall QOL impact score, despite its breadth of content.  While QDIS item content overlaps substantially with the item content of generic measures, because QDIS items are disease-specific, QDIS consistently achieves greater convergent and discriminant validity in comparison with generic measures. QDIS also is the first disease-specific measure to be scored using norm-based scoring, based on a representative sample of the entire U.S. chronically ill general population, as opposed to a single disease.  This advance in standardized scoring is based on evaluation of crucial assumptions about IRT item parameters used in scoring disease-specific QOL impact across diseases that were made during the development of QDIS.  Due to its standardization of content and scoring across diseases, QDIS also is the first disease-specific measure that allows comparisons of disease-specific outcomes across diseases. Nina Deng and her UMass Medical School (UMMS) and JWRG collaborators tested assumptions underlying standardized scoring of QDIS, including differential item functioning (DIF) and other psychometric properties […]
May 30, 2014

Are patients able to attribute QOL problems to a specific condition when they have multiple comorbid conditions?

WORCESTER, MA, May 30, 2014.   The Agency for Health Research and Quality (AHRQ) announced the award of a grant to Dr. John Ware and researchers he leads at UMass Medical School and JWRG to break new ground by taking a previous measurement advance into a new direction. An innovative computerized measurement advance, the Quality of Life Disease Impact Scale (QDIS®), makes it much easier to gather individualized information from patients who have multiple chronic conditions. QDIS was developed by JWRG to rapidly and reliably determine how much each individual chronic condition a patient has and all comorbid conditions combined affect what they are able to do, how they feel and their overall quality of life (QOL). The ultimate goal is to better quantify patient “voices” to better understand how to improve the outcomes of their care. The R&D project uses a large national database already collected by JWRG for representative samples of chronically-ill US adults. The information it contains is unique because it is the first to standardize both the content and scoring of disease-specific QOL measures to capture patient reported health and QOL outcomes.  QDIS is also the first norm-based scoring of disease-specific QOL impact across multiple conditions.  The breakthrough that made the national database possible was JWRG’s new Internet-based system that automatically adapts self-administered surveys to measure the impact of multiple diseases. AHRQ peer reviewers noted many significant strengths of the new UMass-JWRG R&D project, including a strong investigative team of highly productive researchers, a scientifically rigorous approach […]
March 16, 2014

17-year literature review shows that patient-reported outcomes consistently respond to clinically-efficacious drugs but with wide variability in rates of important quality of life improvements

WORCESTER, MA, March 17, 2014 – Some of the most debated questions regarding growing reliance on patient-reported outcome (PRO) surveys in evaluating the quality of health care were addressed in an article by a medical student and a professor today in Medical Care, a research journal published by the American Public Health Association. Are self-administered patient survey measures responsive enough to capture the quality of life benefits of improvements in laboratory tests and other clinical outcomes caused by drug therapies? How often do clinically-efficacious therapies lead to important and meaningful improvements in what patients are able to do in everyday life? According to the most comprehensive review of quality of life outcomes reported from well-controlled clinical trials of drug therapies, the answer to the first question is “Yes,” more than 80% of the time. However, there is wide variability in the rates at which drug treatments achieved accepted thresholds for improvements in quality of life (about 58% overall; 0-100% across clinical areas). For example, drug therapies for rheumatoid arthritis, psoriatic arthritis, and psoriasis consistently achieved the largest average functional health improvements, whereas therapies for peripheral arterial disease or chronic obstructive pulmonary disease achieved much smaller benefits, often below thresholds considered important and meaningful. The reviewers note that, with the migration to electronic data capture and modern adaptive health survey methods, the efficiency and usefulness of PRO measures will increase. For the important health domains that old and new measures have in common, cross-calibration of new measures with existing measures will […]
January 15, 2013

Outcomes leader Dr. Ware elected charter fellow of prestigious National Academy of Inventors

WORCESTER, MA, January 15, 2013 — Dr. John E. Ware, Jr., Chief Science Officer and Founder of John Ware Research Group, Inc. (JWRG), a leading health outcomes company, was elected a Charter Fellow of the National Academy of Inventors (NAI). The NAI recognizes inventors who hold U.S. patents. Nominated by the University of Massachusetts Medical School where Dr. Ware is also Professor and Chief of the Outcomes Measurement Sciences Division in the Department of Quantitative Health Sciences, Dr. Ware said, "it is an honor to be an NAI Charter Fellow and to be in the company of such distinguished innovators." Dr. Ware, holder of numerous awards, is a globally recognized inventor in the patient reported outcomes (PRO) field. PROs are used in clinical trials and healthcare, including medical practice and electronic health records. PROs measure treatment outcomes, now at the forefront of healthcare reform. The newly elected NAI class of Fellows is comprised of inventors and innovators from 56 global research universities and non-profit research institutes who collectively hold over 3,200 U.S. patents. Included among the Fellows are eight Nobel Laureates, 14 presidents of research universities and non-profit research institutes.53 members from the National Academies (National Academy of Sciences, National Academy of Engineering and Institute of Medicine, of which Dr. Ware is a member), 11 inductees into the National Inventors Hall of Fame, two Fellows of the Royal Society, five recipients of the National Medal of Technology and Innovation, four recipients of the National Medal of Science, and 31 AAAS […]
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