Patientreported outcomes encompass data reported directly by people about how they feel and function, such as symptoms, physical function, and quality of life. Improving the measurement of patientreported outcomes. Practical approaches that health care systems can adopt for measuring the health of patients and populations, in sustainably improving health care. The science of measuring patientreported outcomes pros has advanced substantially in recent decades, allowing evaluation of how patients feel and function in clinical research. Research is also needed to develop novel analytic approaches to. Ahmed s, berzon ra, revicki da, lenderking wr, moinpour cm, basch e, reeve bb, wu aw.
Overall survival for patientreported symptom monitoring. The second paper, patientreported outcomes in performance measurement, 9 dealt with issues relating to processes for endorsing performance measures that reflect the end results ultimate outcomes of health care. This publication is part of the rti press book series. Ncis patientreported outcomes version of the common terminology criteria for adverse events proctcae pro measure of the frequency, severity andor interference of symptoms experienced by. Perspective patientreported outcome performance measures in oncology by ethan basch, md, claire snyder, phd, kristen mcniff, mph, rebecca brown, suzanne maddux, rn. Methods for developing patientreported outcomebased performance measures propms. Patientreported outcomes in cancer clinical trials. One example is the percentage of patients in an accountable care organization with an improved depression score as measured by a standardized tool such as the phq9.
Methodological issues in the selection, administration and. Patientreported outcomes encompass data reported directly by people about how. An original nih roadmap program, the goal of this 10year project was to develop an efficient stateoftheart assessment system for selfreported health. Basch and bennett advocated for the use of patientreported outcomes in clinical studies for interventions for rare disease as the best measurement tools for how a patient feels and functions 89. Although many pro questionnaires were initially developed for use in clinical trials, there is rapidly growing interest to integrate pros into routine clinical practice for monitoring patient clinical status. Recommended patientreported core set of symptoms to measure.
Patients rate their health by scoring the severity or difficulty in completing certain tasks or routine activities. An irtbased analysis from the patientreported outcomes measurement information system promis initiative. Patientreported outcomes in performance measurement and millions of other books are available for amazon kindle. Some information on this profile has been compiled automatically from duke databases and external sources. Ethan basch, md, msc1, john spertus, md, mph, facc 2. Patientreported outcomes in performance measurement. Ultimately, he plans to use the outcomes data from the measurement program to compare his departments performance with others in order to find ways to improve, but this was not touted as the. Bladder cancer bc patients with advanced disease have poor outcomes. Ethan basch, md, msc, 1 bryce reeve, phd, 2 sandra a. Helen burstin, md, mph, chief scientific officer, national quality forum measurement of patientreported outcomes is the next frontier in health care delivery quality assessment.
The following represents disclosure information provided by authors of this manuscript. Guidelines for inclusion of patientreported outcomes in. Implications for clinical practice and health care policy. Introduction patientreported outcomes in performance. This book addresses the major methodological issues related to choosing, administering. Ethan basch at university of north carolina at chapel hill. Patient reported symptoms associated with quality of life.
Patientreported outcomes in performance measurement 1st edition. Patientreported outcomes in clinical trials of rare diseases. The main outcome measures from the patient perspective include quality of life. Ethan basch, director of cancer outcomes research program at the uncchapel hill department of medicine, division of hematology and oncology, university of north carolina, usa the use of patientreported. Ethan basch, md, msc, director, cancer outcomes research program. Laura sit, michael fruscione, and deborah schrag, memorial sloan kettering cancer center, new york, ny. Patientreported outcomes pros such as symptoms, quality of life, and functional status are commonly measured in cancer clinical trials, 1,2 increasingly in comparative effectiveness research, 3,4 and in routine clinical care for symptom screening and to enhance communication.
The use of digitally collected patientreported outcome measures for newly. Patientreported outcome performance measures in oncology. Creatively linking care outcomes, system performance and professional development batalden pb, foster tc eds. An area of focus of pcori is standardization of the assessment of safety in cer. This book addresses the major methodological issues related to choosing, administering, and using patientreported outcomes pros, particularly in clinical practice settings. Updated results of a clinical trial that launched in 2007 were presented today by ethan basch, md, of memorial sloan kettering cancer center msk and unc lineberger comprehensive cancer center, at the annual meeting of the american society of clinical oncology. Implementation of patientreported outcomes in routine. Multiple studies show that systematic monitoring of patients using pros improves patientclinician communication, clinician awareness of symptoms, symptom management, patient satisfaction, quality of life, and overall survival. Enrollment in the patientreported symptom monitoring group was enriched for a preplanned subgroup with low baseline computer experience as part of a feasibility substudy with a 2. Patientreported outcomes measurement information system. Ethan baschs research is in clinical informatics with a particular focus on patient reported outcomes. Ethan basch, director of cancer outcomes research program at the uncchapel hill department of medicine, division of hematology and oncology, university of north carolina, usa the use of. The use of patient reported outcomes pro within comparative effectiveness research. Pros are measures of how patients feel or what they are able to do as they are dealing with chronic diseases or conditions.
Written primarily by statisticians drawn from the same large multinational. Patientreported outcome performance measures in oncology ncbi. From 20052008, it was funded by the nhs information centre for health and social care. A performance measure that is based on patientreported outcomes assessed through data often collected through a prom and then aggregated for an accountable health care entity. New york, nynovember 8, 2015 a study at hospital for special surgery hss evaluating the patient reported outcomes measurement system promis for patients with lupus finds that the questionnaire is a valid way to assess subjective patient experience.
Would you be interested in patient reported outcome. Symptom monitoring with patientreported outcomes during. The patientreported outcomes measurement information system promis provides clinicians and researchers access to reliable, valid, and flexible measures of health status that assess physical, mental, and social wellbeing from the patient perspective. Pro methods, such as questionnaires, are used in clinical trials or other clinical settings, to help better understand a treatments efficacy or. Overall survival results of a trial assessing patientreported. More recent efforts to understand the clinical significance of patientreported outcomes, called performance measures, are underway. Symptoms are common among patients receiving treatment of advanced cancers 1,2 and often go undetected. Social function dexterity physical function cognitive function pain the charge. The aim of this study is to report correlations between selected pros and qol and thus to present symptoms that influence qol. New publication promis health organization pho, il. Transform clinical research with crosscutting pros. Development of the national cancer institutes patientreported outcomes version of the common terminology criteria for adverse. Take part in our 3question survey and tell us if patient reported outcomes are of interest to you.
Methods for developing patientreported outcomebased. The level of association between functional performance. Patientreported outcome measures proms are defined as standardized, validated questionnaires which are also called instruments completed by patients to measure their perception of their functional wellbeing and health status national health service, 2009. Data showed that systematic symptom monitoring during outpatient chemotherapy using webbased patientreported. Patientreported outcomes are often collected in the form of standardized questionnaires, or patientreported outcome measures proms. The patientreported outcomes measurement information system promis is an nihfunded initiative to develop and validate patient reported outcomes pros for clinical research and practice. The patient reported outcomes measurement information. Ethan basch, md, msc, director, cancer outcomes research program, university of. A patientreported outcome pro is a health outcome directly reported by the patient who experienced it. Promis measures are standardized, allowing for assessment of many patientreported outcome domainsincluding pain, fatigue, emotional. And the university of north carolina ethan basch, md, msc. Difference in method of administration did not significantly impact item response. How hospitals are using patientreported outcomes to.
The recent book, patientreported outcomes, measurement, implementation and interpretation, by cappelleri and his colleagues is a timely synthesis of the current thinking and practice of psychometrics applied to patient reported outcomes pros, and pro data analysis. Promis aims to enhance and standardize measurement of several selected pros through both computer adaptive testing and traditional paper and pencil instruments. Cco holds quality of care as a key value and performance management is an. Unlike clinical and physiological outcomes, proms can directly understand how health conditions or interventions affect patients quality of life. Manuscript in preparation for journal of clinical oncology 3basch et al. Patient reported outcomes pros in performance measurement. Patientreported outcomes in clinical trials of rare. There is increasing interest to integrate collection of patientreported outcomes pros in routine practice to enhance clinical care. Zullig, phd, mph is a health services researcher, associate professor in the duke department of population health sciences, investigator at the durham veterans affairs medical center, and adjunct assistant professor of health policy and management at the university of north carolina at chapel hill. Validity and reliability of the patientreported outcomes version of the common terminology criteria for adverse events proctcae. Electronic toxicity monitoring and patientreported outcomes. Assessment of the patient experience in populations with rare diseases can be successfully achieved using pro measures when careful planning and rigorous methods are employed. The process of assessing patient symptoms and functionality using patientreported outcomes pros and functional performance status fps is an essential aspect of patientcentered oncology research and care. Implementation of patientreported outcomes in routine medical.
Patient reported outcome measures in the clinical setting. To improve assessment of symptomatic toxicity in cancer clinical trials and complement clinicianbased toxicity reporting, the us national cancer institute developed a measurement system called the patientreported outcomes version of the common terminology criteria. Ethan basch, md, msc1, john spertus, md, mph, facc2. Symptom monitoring with patientreported outcomes during routine cancer treatment. Pros have commonly been evaluated in clinical trials for drug and medical device. What are novel ways to present pro results to clinicians and patients to improve their usefulness. The patient reported outcomes measurement information system promis david cella,phd northwestern university, chicago, il, usa.
This transnih initiative aims to use irt, item banks, and computer adaptive testing to measure patientreported symptoms such as pain and fatigue and aspects of health related quality of life across a wide variety of chronic diseases and conditions. However, pro and fps measures are often employed separately or inconsistently combined. Ethan basch, md, of the university of north carolina at chapel hill, summarizes a session he chaired on the burgeoning use of patientreported outcomes and wearable ethan basch, md, on assessing quality. Methodological issues in the selection, administration and use of patient reported outcomes in performance measurement in health care settings. Ncis patientreported outcomes version of the common. From 19982005, it was funded by the department of health through nchod.
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