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March 10, 2023
For permission to use JWRG’s QGEN and QDIS short-form surveys worldwide, contact the non-profit Mapi Research Trust (MRT). In addition to royalty-free access for academic research, MRT is the source for commercial licenses to use QGEN and QDIS by medical products and pharmaceutical companies, healthcare delivery organizations, health information technology vendors and all other commercial applications. Submit your request to Mapi Research Trust’s ePROVIDE platform. QGEN is a new survey developed by JWRG to measure eight essential QOL domains, including functioning (physical, role, and social) and feelings (pain, vitality, and emotional well-being). QGEN items improve Medical Outcomes Study (MOS) and other legacy short form items by increasing response category ranges for three functioning domains and constructing an item directly measuring each of the three higher-order feeling domains (mental, vitality and pain) factors. Benefits include greater item efficiency and response categories increasing score range to reduce ceiling effects. QGEN single-item scores are scored to provide unbiased estimates of average SF-36 multi-item profile scores for their eight common QOL domains. QGEN items also yield unbiased estimates of SF-36 physical (PCS) and mental (MCS) summary scores and the SF-6D health utility index. For all forms, higher scores indicate better functioning and well-being. Profiles and summary scores are transformed to have mean=50 and SD=10 in the general US population using 2020 norms. This standardization enables comparability with three decades of population norms, published effect size and minimally important differences, and other interpretation guidelines. QDIS is a family of more efficient and psychometrically-sound disease specific QOL impact forms with content as […]
March 9, 2023
September 18-25, 2023 | Harvard School of Public Health, Boston, MA After almost 30 years of lecturing at Harvard, Dr. Ware presented his last scheduled lecture entitled “State of the Art of Methods for Health Outcomes Measurement and Evaluation – I” during the September 16-23 course at the Harvard School of Public Health, Boston, MA. The lecture covered the 40-year evolution of survey content and noteworthy conceptual and methodological milestones in the history of improving patient-reported outcome measures (PROMs). The latter included: applications of item response theory (IRT) and waves of development of very homogeneous survey item banks; increases in the number of generic PRO scales; contrasting efforts to develop summary physical and mental measures that each cover a wider range and simplify reporting of outcomes; new “super” single-item-per-domain (SIPD) short-forms that improve psychometric performance by increasing score range and reducing ceiling effects in comparison with legacy tools; and standardized IRT-based metrics common to new and legacy generic PROs. A new generation of more valid and responsive disease-specific PROs was also discussed. These new methods, which are standardized in both content and scoring across diseases and norm-based, use disease-specific attributions to achieve a summary score that fills the gap between disease-specific symptoms that are not QOL and generic QOL measures that are not disease-specific. A new kind of adaptive survey logic that automatically adapts to the presence of multiple conditions was also discussed as a more practical solution to integrating disease-specific and generic measures into a common “dashboard” of PROs.
March 28, 2019
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 reported that Kidney Disease Quality of Life (KDQOL-36) measures are less efficient than new CKD-specific QOL Disease Impact Scale (QDIS) outcome measures according to a study comparing the clinical validity of these methods published in az leading clinicasl journal. The Nephrology News noted that current patient-reported outcome measures are not as practical or clinically useful as is needed for patients with CKD. Therefore, researchers compared the usefulness a new CKD-specific QDIS scale against the commonly used 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 outcome 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 3 to 5, on dialysis or post-transplant) were included for a total of 145 patients. According to the study, each patient completed the KDQOL-36, SF-12, CKD-QOL-6 (QDIS-CKD prototype) static and computer adaptive test (CAT) forms at baseline and 3 months. Researchers compared baseline results with 3-month outcomes to determine the efficiency and validity […]
March 21, 2019
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
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 […]