Latest news from JWRG

News

July 7, 2020

QGEN® WEBINAR ANNOUNCED

Patient-Reported Outcome Assessments: Spotlight on the QOL General (QGEN®) 1-Minute Alternative to SF-36 September 30, 2020    9AM ET In this webinar, Dr.John Ware, developer of the SF-36, explains how the new 1-minute QGEN survey was developed and evaluated as a more efficient alternative to common SF-36, PROMIS and other measures and how it was normed in a U.S probability sample of adults in 2020. Findings show that, while maintaining equivalent validity and average scores for common general QOL domains, QGEN items increase the range of measurement enough to reduce ceiling effects for the dual purposes of monitoring group outcomes and screening for individual levels of functional health and well-being requiring more measurement. Presenters: Dr. John E. Ware is an internationally recognized expert in patient-reported outcomes (PROs) and an elected member of the National Academy of Medicine . He led the development of outcome measures used in the RAND Health Insurance Experiment, served as the principal investigator for the Medical Outcomes Study where he developed the SF-36® Health Survey and launched and led International Quality of Life Assessment Project translations of the SF-36 for use in multinational clinical trials and population health surveys. His current focus is on more practical and integrated general and disease-specific PROs. Marie-Pierre Emery has been working in the field of Patient-Reported Outcomes (PRO) and Clinical Outcome Assessments (COA) within the non-profit Mapi Research Trust for over 25 years. Marie-Pierre has developed and contributed to the success of all PRO and COA information activities at Mapi Research […]
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 […]
Buy now