Latest news from JWRG


March 10, 2023

Licenses to Use JWRG Disease-specific (QDIS®) and General (QGEN®) Health Surveys Are Granted by Mapi Research Trust (MRT) 

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

Measurement, Design, and Analysis Methods for Health Outcomes Research Course: Ware Lecture

September 18-25, 2023 | Harvard School of Public Health, Boston, MA Dr. Ware will present his annual 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 will cover 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 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 legacy generic PROs.  A new generation of more valid and responsive disease-specific PROs will be discussed.  These new methods, which are standardized across diseases and norm-based, yield 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 will be discussed as a more practical solution to integrating disease-specific and generic measures into a common “dashboard” of PROs.  For more information:
March 28, 2019

Ware explains to Nephrology News how new CKD-specific QOL measures can be 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 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 […]
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