Mapi Research Trust (MRT) to Manage Licensing and Distribution of Quality of Life Disease Impact Scale (QDIS^®) Surveys for John Ware Research Group (JWRG)

            JWRG are pleased to announce that the non-profit Mapi Research Trust (MRT) will manage and distribute their licenses to use QDIS survey forms worldwide. MRT has been a leading provider of patient-centered outcomes information worldwide for nearly two decades and exclusively distributes more than 400 families of questionnaires on behalf of developers in 130 countries. In addition to royalty-free access to QDIS for academic research, MRT will manage and distribute commercial licenses to use QDIS by medical products and pharmaceutical companies, healthcare delivery organizations, health information technology vendors and for other commercial applications. 

            QDIS is a family of very efficient and psychometrically-sound disease specific Quality of Life (QOL) impact forms with content expanded to be as comprehensive as the best generic QOL surveys. Single- and multi-item static and adaptive CAT forms of QDIS differ from generic surveys by ...

Ware explains to Nephrology News and Issues how a new CKD-specific QOL measure and computer adaptive tests are more efficient than current methods

Ware J, et al.J Am Soc Nephrol.2019;doi:JASN-2018-08-0814.R3

March 22, 2019

Nephrology News and Issues noted that the current method of measuring patient quality of life using the Kidney Disease Quality of Life-36 scale is less efficient than using a CKD-specific survey; and computerized adaptive tests had proven more effective than static ones, according to a published study.

It also noted that the current method of measuring patient quality of life using the Kidney Disease Quality of Life-36 scale is less efficient than using a CKD-specific survey; and computerized adaptive tests had proven more effective than static ones, according to a published study.

It is noted that current patient-reported outcome measures are not as practical or cli ...

Leading Clinical Journal Article Shows That New and Briefer Disease-specific Quality of life (QOL) Measures Are Also More Clinically Valid

WATERTOWN, MA, March 21, 2019 – JWRG’s efforts to improve disease-specific health-related QOL measures by broadening item content, strengthening psychometric methods and maintaining 1-minute response times can also make QOL measures more valid and useful clinically, according to a study of patients with chronic kidney disease (CKD) published today in the Journal of the American Society of Nephrology (JASN). Overall, compared with currently-used KDQOL-36 CKD-specific and generic SF-12 measures, new 6-item and computerized adaptive test (CAT) summaries of CKD-specific QOL impact performed better across multiple tests of clinical validity. New CAT surveys were more efficient than fixed-length surveys and were the only measures better in every clinical test.

As Dr. John Ware, JWRG’s Founder and Chief Science Officer, noted in his comments to the American Society of Nephrology “Quality of life is th ...

American Society of Nephrology Announces Studies Examining Ways to Assess Quality of Life in Patients with Kidney Disease

Washington, DC, March 21, 2019 – In a press release, the American Society of Nephrology reports that in addition to monitoring patients’ health through specific clinical tests, physicians should also consider patient-reported outcomes and health-related quality of life, or what patients say about how they feel and what they can do. Two new studies that appear in an upcoming issue of the Journal of the American Society of Nephrology (JASN) address ways to do this for patients with chronic kidney disease (CKD).

To gain these perspectives from patients with CKD, physicians often use the Kidney Disease Quality of Life (KDQOL)-36, a survey that asks patients for their views about their health. Despite its widespread use, the KDQOL-36 was developed decades ago and may not capture all of patients’ concerns.

In a JASN study that included 485 patients with CKD, John Ware, Jr., PhD (John Ware Research Group) and his colleagues developed and evaluated an improved and briefer approach to measuring quality of life across the spectrum from early CKD to kidney failure, or end-stage kidney disease (ESKD). The team found ...

A 3-minute narrated slide show of alternate forms of JWRG’s Disease-specific QOL Impact Scale (QDIS^®) now available

WATERTOWN, MA, MAY 31, 2018 – Dr. John Ware, the developer of QDIS^®, recently demonstrated and explained its alternate forms now in use.  A 3-minute slideshow summary with Dr. Ware’s narrative is now available for viewing here.

All QDIS^® forms broaden the content of disease-specific health-related quality of life (QOL) impact measures and use standardize scoring based on norms for the chronically ill US population. Now available are static and computerized adaptive test (CAT) forms that automatically adapt to the presence of multiple comorbid conditions (MCC) and the impact of each condition. Output scores include QOL impact for each condition, the first disease-specific QOL impact profile standardized across diseases and the first individualized, aggregate MCC total QOL impact score.

New disease-specific QOL impact scale (QDIS^®) for multiple chronic conditions published by JWRG

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. ...

Adults with multiple chronic conditions can distinguish the QOL impact of most specific diseases

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 ...

Study links biomarkers of exposure to new smoking-specific and generic quality of life measures in current and former smokers

WORCESTER, MA, August 10, 2015 – Results from an article published in Health and Quality of Life Outcomes link a new smoking-specific quality of life measure based on JWRG’s QOL Disease Impact Scale (QDIS^®) to smoking behavior and to smoking-specific symptoms. This article presented data from two independent studies: a German trial and a US general population survey. Like many others, these studies both focused on young and otherwise healthy current and former adult smokers. Both studies found that the QDIS smoking impact scale had stronger associations than the generic SF-36^® Health Survey with smoking status (current versus former) and the number of cigarettes smoked per day. In the German trial, which also included laboratory test results, the QDIS smoking impact measure also correlated substantially and significantly higher than the SF-36 with four clinical biomarkers of tobacco exposure and impact. These and other results showed that the German- and English-language QDIS smoking impact scale and other meas ...

New Tobacco-specific Quality of Life Impact Tool (TQOLIT) showed measurement advantages in study of otherwise healthy smokers

WORCESTER, MA, April 27, 2015 – A new quality of life instrument, the Tobacco Quality of Life Impact Tool (TQOLIT™), developed by the John Ware Research Group, was proven to be useful in a 6-month clinical trial of the effects of switching smokers to a reduced toxicant prototype cigarette. Like many smoking studies, this trial focused on young and otherwise healthy adult current and former smokers for whom reliable measurement throughout the range of functional health and well-being is critical.  The results were recently published in Nicotine & Tobacco Research.

Measuring the health-related quality of life (HRQOL) of young and middle-aged smokers is challenging because many of the impacts of smoking are not apparent for decades. In addition, prior to QDIS there was no brief HRQOL scale that measured the impact of smoking on physical, emotional and social aspects of life. TQOLIT integrates several JWRG advances in patient-reported outcomes (PRO) measurement to address these challenges.

First, TQOLIT includes a short 7-item scale that measur ...

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.  Des ...

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, a ...

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 dise ...

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 exampl ...

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 researc ...