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Ware Lectures on Quality of Life Measurement Developments in 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 ...
Read MoreWare Lecture Tour 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 con ...
Read MoreMeasurement, Design, and Analysis Methods for Health Outcomes Research Course: Ware Lecture
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 l ...
Read MoreIntegrating Generic Health Outcomes Monitoring and Depression Screening
In a panel discussion session entitled “PHQ-9: Is it a Good Match for Integrated Primary Care?,” at the annual meeting of the Society of Behavioral Medicine, Dr. Ware will summarize how the adoption of measures used in the routine monitoring of generic physical and mental health outcomes can be used to more efficiently screen and manage patients in greatest need of mental and behavioral health services. The session will be chaired by Jennifer S. Funderburk, PhD from the VA Center for Integrated Healthcare. Other panelists will include Kurt Kroenke, MD, co-developer of the PHQ-9, and Rodger S. Kessler, PhD, an expert researcher on integrated care. The discussion will be led and summarized by William Douglas Tynan, PhD, a leader within the American Psychological Association on integrated health care.
Choosing Patient-Reported Outcomes and Measurement Methods for Team Based Health Care
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 auto ...
Read MoreAdvances in the Measurement of Patient-Reported Outcomes: Implications for Comparative Effectiveness Research
In a session entitled “Quality of Life - from PROMs to ICERs” at the 2017 NCRI Cancer Conference, Dr. Ware will summarize advances in PRO measurement and their implications for effectiveness research. Understanding has never been greater regarding the: (1) breadth of health concepts that are essential for validity in quantifying patient reported outcomes (PROs); (2) importance of matching operational definitions (e.g., behavioral functioning, subjective ill-being and well-being,personal evaluation) to each health concept; (3) advantages of better single items for both psychometric and utility methods; and (4) impl ...
Read MoreImproving Single-Item Generic Health Survey Measures
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 Genera ...
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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 Di ...
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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 ...
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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, e ...
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Dr. Ware participated in the 2-day celebration of the 40th anniversary of the RAND Health Insurance Experiment (HIE), the largest health policy study in U.S. history. He reunited with his colleagues on the HIE research team and others at RAND’s Santa Monica headquarters for discussions about how this landmark study has changed the health policy landscape over the last few decades.
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Dr. Ware presented a seminar on the latest patient-reported outcome (PRO) measurement developments and their implications for clinical research and practice and had open discussions with researchers and clinicians actively involved in patient-centered data initiatives at Cleveland Clinic on February 12, 2016.
The seminar briefly summarized the history of PRO measurement and some of its most innovative and important recent conceptual and methodological advances. These advances include the standardization of metrics across population surveys, patient registries, clinical trials and clinical practice applications; methods that are adapted to the specific requirements of different applications while maintaining score comparability across applications; a new generation of disease-specific PROs that use comprehensive 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; more aggressive approaches to making PRO measures ...
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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&r ...
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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 17-19 at the Harvard School of Public Health. The lecture covered noteworthy milestones in the history of patient-reported outcomes (PRO) as well as some of the most innovative and important recent conceptual and methodological advances. The latter included a new generation of standardized (both content and scoring) disease-specific PROs that fill the gap between widely-used disease-specific measures 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?”&nb ...
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Dr. Ware lectured on conceptual and methodological milestones in patient-reported outcomes (PRO) measurement development. He introduced a new generation of disease-specific PROs that fill the gap between widely-used disease-specific measures that are not health-related quality of life (QOL) and generic QOL measures that are not disease-specific. Dr. Ware showed how both the content and scoring of disease-specific QOL impact measures has been standardized across diseases to enable norm-based scoring and interpretation of disease-specific PROs in the chronically-ill US population. Results from a pilot demonstration test in an ongoing surgical registry illustrated how a powerful new adaptive survey logic can automatically adapt PROs to capture the impact of multiple chronic conditions to make comprehensive measurement more practical.
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Dr. Ware presented an invited lecture covering noteworthy milestones in the history of patient-reported outcomes (PRO) including a new generation of standardized disease-specific PROs, the QOL Disease-specific Impact Scale (QDIS®), that fill the gap between widely-used disease-specific measures that do not measure quality of life (QOL) and generic QOL measures that do not measure disease-specific outcomes. In his workshop, Dr. Ware showed how both the content and scoring of condition-specific QOL impact measures, including measures of the QOL impact attributed to smoking, can be standardized across conditions using QDIS and how norm-based scoring can make interpretation much easier. Dr. Ware also presented examples of how to test whether survey respondents who have multiple conditions such as arthritis and asthma are able to make valid ratings of the QOL impact of each condition using QDIS. Another consideration of particular importance in smoking research that focuses on otherwise well smokers (free of chronic health problems) is the r ...
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International investigators who have been comparing health survey items with and without health attribution for more than 10 years teamed together and presented their findings at a special plenary session on Cutting Edge Research at the 21st Annual Conference of the International Society for Quality of Life Research (ISOQOL) in Berlin, Germany on October 16, 2014. This ISOQOL session highlighted high quality research from members of the ISOQOL community. The research team (Jakob Bjorner, Janine Devine, Barbara Gandek, Matthias Rose, Mark Kosinski, and John Ware) presented results from studies of a representative sample of US adults (N=900) who completed sets of questions about role functioning which differed in attribution (no attribution or attribution to health, physical health, or emotional health) but were otherwise identical in content. For example, some standard measures, such as the SF-36 Role Physical and Role Emotional subscales, use items with health attribution (e.g., “… have you had any of the following problems with your work or other regular daily activities as a result of your physic ...
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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 18, 2014 to August 20, 2014 at the Harvard School of Public Health. The lecture covered noteworthy conceptual and methodological developments in patient-reported outcomes (PRO) measurement, advantages of standardization (in both content, and underlying metrics), advances in psychometric methods and norm-based scoring (for both generic and disease-specific PROs), examples of improved electronic data capture and connectivity, and the future of more comprehensive and more practical PRO information systems in health care. Dr. Ware’s afternoon workshops during the Harvard course addressed “Advances in Integrating Generic and Disease-Specific Assessments and Making them More Efficient and Useful.” Objectives included discussing how both the content and scoring of disease-specific QOL impact measures can be standardized, how to evaluate improvements in disease-specifi8c and generic QOL surveys, a ...
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In a session on Population Models to Account for Quality-of-Life Measures, Dr. Ware presented a talk entitled, "Improving Quality of Life Outcomes Measures for Use in Tobacco Research: Lessons from Population Surveys and Clinical Research." Presentations in this session and a panel discussion covered methods for assessing changes in quality-of-life and other measures, which demonstrate the effects on morbidity due to tobacco use. The conference, hosted by the Center for Tobacco Products (CTP), was intended to stimulate discussion among academic researchers, industry participants, FDA scientists, and other stakeholders on the challenges and opportunities associated with using computer statistical modeling to assess the effects of tobacco products on population health.
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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.
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A presentation entitled "The Validity of Quality Of Life Attributions to Specific Diseases: A Multitrait-Multimethod Comparison" was delivered by Dr. Rick Guyer of JWRG at the 16th Annual ISPOR European Congress in Dublin Ireland on November 4th, 2013. This study tested the convergent and discriminant validity of disease-specific quality of life (QOL) impact attributions using the Campbell and Fiske (1959) multitrait-multimethod (MTMM) approach. The study expands beyond previous empirical tests of the new Quality of Life Disease Impact Scale (QDIS®) by focusing on adults with three comorbid conditions. Results strongly support the convergent and discriminant validity of QDIS survey measures of disease-specific QOL impact attributed specifically to hip/knee, cardiovascular, and pulmonary conditions.
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Dr. Ware lectured on "The Impact of Health Care: Quantifying the Voice of the Patient," one of four presentations during the Albert Sherman Center Inaugural Scientific Symposium at the UMass Medical School on October 10th, 2013. Other speakers included Joseph Goldstein and Michael Brown (University of Texas Southwestern Medical Center) who summarized their Nobel Prize winning discoveries in 2-part lectures entitled: "A Century of Cholesterol and Coronaries." Robert Langer (Massachusetts Institute of Technology) lectured on "Controlled Drug Delivery and Tissue Engineering for Angiogenesis Inhibitors." Dr. Ware demonstrated advances in psychometric methods and Internet-based surveys that are fundamental to understanding patient functioning and well-being outcomes in clinical research and practice.
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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 ...
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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 August 19, 2013 to August 21, 2013 at the Harvard School of Public Health. The lecture covered noteworthy conceptual and methodological developments, advantages of standardization (in both content and underlying metrics), advances in psychometric methods and norm-based scoring (for both generic and disease-specific PROs), examples of improved electronic data capture and connectivity, and the future of more comprehensive and more practical PRO information systems in health care. Dr. Ware’s afternoon Harvard course workshops addressed “Integrating and Improving Generic and Disease-Specific Assessments.” Objectives included discussing 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. More information can be foun ...
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Dr. Ware presented his annual lecture "Quality of Life Update – 2012" 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 14th IPPCR lecture. He focused on advances in integrating disease-specific and generic PROs while illustrating comprehensive generic and disease-specific patient reported outcomes (PRO) measurement. More information on attending the course directly, or remotely can be found here.
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This presentation entitled “Standardizing the Metric and Increasing the Efficiency of Physical Functioning Outcomes Measurement” demonstrated that improved adaptive survey logic (ASLX®) combined with improved physical functioning survey items can achieve the following improvements: a standardized scale that maintains backward comparability with legacy generic physical functioning measures; reductions in respondent burden of 50% in comparison with routine CAT surveys; reduced percentage scoring at the highest score level (ceiling); and improved range over which reliable measurement can be achieved, including for those with mild impairment. The presentation was made by Dr. Rick Guyer of JWRG on Tuesday, November 6th at the ISPOR 15th Annual European Congress.
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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 ...
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Dr. Ware gave a keynote speech as part of the special satellite session “Information Technology for Health” at the prestigious World Health Summit held in Berlin, Germany, on October 24, 2012. His topic was information technology advances enabling standardization of patient-reported outcome (PRO) metrics and more comprehensive (integrated disease-specific and generic PROs), better integrated (traditional clinical and PRO information) and more efficient (more practical and more precise) PRO assessment systems.
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John Ware Research Group (JWRG) is a privately held company founded in 2009 by John E. Ware, Jr., PhD to continue innovative research to improve patient-reported outcome (PRO) tools for use in population health surveys, clinical research and clinical practice worldwide.
Phone: +1 (508) 363-1236
Address:
10 Wheeler Court, Watertown, MA 02472
Email: info@jwrginc.com