Citation

Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. (2015). Patient-reported outcomes in performance measurement. (RTI Press Publication No. BK-0014-1509). Research Triangle Park, NC: RTI Press. DOI: 10.3768/rtipress.2015.bk.0014.1509

Abstract

Patient-reported outcomes (PROs) are measures of how patients feel or what they are able to do in the context of their health status; PROs are reports, usually on questionnaires, about a patient's health conditions, health behaviors, or experiences with health care that individuals report directly, without modification of responses by clinicians or others; thus, they directly reflect the voice of the patient. PROs cover domains such as physical health, mental and emotional health, functioning, symptoms and symptom burden, and health behaviors. They are relevant for many activities: helping patients and their clinicians make informed decisions about health care, monitoring the progress of care, setting policies for coverage and reimbursement of health services, improving the quality of health care services, and tracking or reporting on the performance of health care delivery organizations. We address the major methodological issues related to choosing, administering, and using PROs for these purposes, particularly in clinical practice settings. We include a framework for best practices in selecting PROs, focusing on choosing appropriate methods and modes for administering PRO measures to accommodate patients with diverse linguistic, cultural, educational, and functional skills, understanding measures developed through both classic and modern test theory, and addressing complex issues relating to scoring and analyzing PRO data.

Author Details

D Cella

David Cella, PhD, is a Professor and Chair of the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine. He is the principal investigator of the National Institutes of Health (NIH) Initiative “HealthMeasures: A Person-Centered Assessment System,” which curates and distributes PROMIS (the Patient Reported Outcomes Measurement Information System) and three other health measurement systems. Dr. Cella is also a founding member and officer of the PROMIS Health Organization, a charitable organization that licenses and promotes the use of PROMIS worldwide.

EA Hahn

Elizabeth A. Hahn, MA, is an Associate Professor in the Departments of Medical Social Sciences and Preventive Medicine, and the Institute for Public Health and Medicine, at Northwestern University Feinberg School of Medicine. Her research primarily involves patient-reported outcomes in chronic illnesses, with a focus on underserved populations and health disparities.

SE Jensen

Sally E. Jensen, PhD, is a Research Assistant Professor in the Departments of Medical Social Sciences and Surgery at Northwestern University Feinberg School of Medicine. Her research focuses on patient-reported outcomes across various medical and surgical patient populations.

Z Butt

Zeeshan Butt, PhD, is an Associate Professor of Medical Social Sciences, Surgery, and Psychiatry and Behavioral Sciences at Northwestern University Feinberg School of Medicine. He also serves as the Associate Director of the Center for Patient-Centered Outcomes there.

CJ Nowinski

Cindy J. Nowinski, MD, PhD, is a Research Associate Professor in the Departments of Medical Social Sciences and Neurology at Northwestern University Feinberg School of Medicine. Her research focuses on the development of patient-reported and objective health outcome measures for use in clinical and epidemiological research and clinical care.

N Rothrock

Nan Rothrock, PhD, is a Research Associate Professor in the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine. Her research focuses on development and application of patient-reported outcome measures in research and practice.

Kathleen Lohr

Kathleen N. Lohr, PhD, is a Distinguished Fellow at RTI International. Her research has involved comparative effectiveness and evidence- based practice, measurement of health status and quality of life, quality of care assessment, clinical practice guidelines, and related health policy issues.

Praise

"Here it is, all in one place. A compact book on patient-reported outcomes beginning with the idea and ending with implementation for performance measurement and integration in electronic health records. A great resource from a team of experts."

—Eugene C. Nelson, DSc, MPH, Professor, The Dartmouth Institute for Health Policy and Clinical Practice

"NQF supported this seminal work to help amplify the essential patient voice in quality measurement. This work provides the right balance of science and practical advice needed to move patient-reported outcomes into the mainstream of performance measurement."

—Helen Burstin, MD, MPH, Chief Scientific Officer, National Quality Forum

"Measurement of patient-reported outcomes is the next frontier in health care delivery quality assessment. Although interest is rapidly growing to integrate the patient’s voice into performance evaluation, guidance is limited on how actually to go about doing this. This monograph provides invaluable practical and methodological insights for those aiming to integrate patient-reported outcomes into a quality program, ranging from selection of outcomes, to measures, analysis, and reporting."

—Ethan Basch, MD, MSc, Director, Cancer Outcomes Research Program, University of North Carolina at Chapel Hill