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August 15, 2019

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 using disease-specific attributions proven to increase validity and responsiveness to changes in severity of a specific disease or condition. QDIS is the first such survey with content and scoring standardized across 36 chronic conditions and normed across diseases in the US chronically ill population (mean=50, SD=10). Because impact scores are standardized, QDIS output also includes the first disease specific QOL impact profile and the first aggregate multiple chronic conditions (MCC) summary QOL score. “The QDIS publications and collaboration with MRT come at a perfect time given the importance of distributing more responsive QOL measures to scholars royalty-free and assuring support for their translations and continued development from commercial licenses worldwide,” said John […]
March 28, 2019

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 John E. Ware Jr. 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 clinically useful as is needed for patients with CKD. Therefore, researchers analyzed the efficacy of a new CKD-specific quality of life scale against the commonly used kidney disease quality of life-36 (KDQOL-36) measure. “Despite its widespread use, the KDQOL-36 has disadvantages. In an attempt to be short to reduce overall respondent burden, important CKD-specific domains are omitted,” the authors wrote. “Short forms also may yield scores that are too imprecise for use in individual patient clinical care. In addition, static surveys such as the KDQOL-36 administer the same questions to everyone, including some questions that may be irrelevant to a specific individual. The range of reliable measurement is restricted, limiting the ability to detect score change associated with changes in disease severity or with treatment [effects].” Three groups of patients (either non-dialysis stages […]
March 21, 2019

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 that both 6-item and adaptive forms of this Chronic Kidney Disease Quality of Life (CKD-QOL) instrument performed better across multiple tests of validity in head-to-head comparisons with a generic assessment of health-related quality of life called SF-12v2 and with CKD-specific KDQOL-36 measures. “Quality of life is the most important outcome to patients, and the computer adaptive survey pays attention to a patient’s answers, saves time, and doesn’t ask questions that […]
March 21, 2019

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 the most important outcome to patients, and the computer adaptive survey pays attention to a patient’s answers, saves time, and doesn’t ask questions that are irrelevant to that individual patient. This research brings us closer to measures of quality of life that are specific to kidney disease and could meaningfully inform the care of individual patients.” The JASN study included 485 CKD patients (non-dialysis Stages 3-5, on dialysis, post-transplant) from 12 sites across four states.  JWRG researchers collaborated with researchers at Tufts Medical Center to compare JWRG’s approach to CKD-specific health-related quality of life measurement with currently-used KDQOL-36 CKD-specific and generic SF-12 survey measures.  The new approach summarized QOL impact attributed to CKD across six QOL domains in a […]
March 19, 2019

Ware Lectures on Quality of Life Measurement Developments in Japan

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.
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