Methods for developing patientreported outcomebased. Lohr, phd, is a distinguished fellow at rti international. The patient reported outcomes measurement information system promis is an nihfunded initiative to develop and validate patient reported outcomes pros for clinical research and practice. Its primary focus was on accountable health care organizations. I wanted to know more about patient reported outcomes pro.
Our team is currently developing a new hiv specific patient reported outcome measure prom of these barriers for use in canada and france along with a digital application for its electronic. Pdf patient reported outcome instruments used in clinical. Hiv, patientreported outcome pro, instrument, nnrti background the primary goal of hiv therapy is to increase diseasefree survival and improve healthrelated quality of life hrql by containing viral replication, avoiding drug resistance, and boosting immunologic function by restoring cd4 count 1, 2. The patient reported outcomes measurement information system promis david cella,phd northwestern university, chicago, il, usa. Proms tools can be completed either during an illness or while treating a health condition. Written primarily by statisticians drawn from the same large multinational. No part of this book may be reproduced in any form by any electronic or. Jun 10, 2015 the promis patient reported outcomes measurement information system initiative developed new ways to measure patient reported outcomes pros, such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on qualityoflife across a variety of chronic diseases. Outcome measurement and valuation what is it and why do we. The patient reported outcomes measurement information system. Measures can also prevent the overuse, underuse, and misuse of health care services and can identify disparities in care delivery and outcomes.
Patientreported outcomes measurement information system promis. Introduction patientreported outcomes in performance. Nqf is a neutral evaluator of performance measures, not a measure developer. Patientreported outcomes to enhance personcentred hiv care. Patientreported outcomes in performance measurement. There is increasing interest to integrate collection of patient reported outcomes pros in routine practice to enhance clinical care. Aug 29, 2017 why patient reported outcomes data is key to healthcare quality patient reported outcomes data is at the heart of truly effective valuebased care and quality improvement, says the national quality forum. Promis aims to enhance and standardize measurement of several selected pros through both computer adaptive testing and traditional paper and pencil instruments. Patient reported outcomes pros may provide valuable information to clinicians and patients when choosing initial antiretroviral therapy. Promis is a government program, funded by nih, but not yet officially endorsed by cms, ahrq, or nqf. Patientreported outcomes in performance measurement ncbi. Psychological outcomes that involve awareness of aids and hiv, knowledge about aids and hiv transmission, and attitudes toward those who are infected and ill may be the easiest outcomes to measure and study, in the sense that these measures are easily incorporated in a survey questionnaire. Quality of life has been proposed as the fourth 90 to complement the unaids 909090 targets to monitor the global hiv response, highlighting a need to address the holistic needs of people living with hiv beyond viral suppression.
When performance measures incorporate patient reported outcomes pros, the result is a patient reported outcome performance measure propm. The first step is to decide what to measure and how to measure it. It can be used with the general population and with individuals living with chronic conditions. Patientreported outcomes measurement information system. The core performance measures completed the rigorous national quality forum infectious disease endorsement process. Implementation of patientreported outcomes in routine. Proms capture the patients perspective of the impact of care on quality of life and ability to function. Quality measurement and incentives have been instrumental in improving the quality of care. Measurement of outcomes evaluating aids prevention. In england standard patient reported outcome measures are being used to track the outcomes of patients with four common surgical conditions. Definitions related to assessing performance using patientreported outcome measures. Measuring quality of life among people living with hiv.
Patientreported outcome measures proms are hot topics in both research and practice. Given the many recognized barriers to art adherence, such an assessment could prove timeconsuming 7. Use of patientreported outcome and experience measures in. The 1917 hivaids clinic was named for its street address in the 1980s to.
Patientreported outcomes in performance measurement table 1. The hdq is novel in that it is the sole hivspecific prom of disability 29. An original nih roadmap program, the goal of this 10year project was to develop an efficient stateoftheart assessment system for selfreported health. Patient reported outcome measures in practice the bmj. The hiv aids bureau encourages ryan white hiv aids program recipients to use the revised performance measures, including the core performance measures. It is not oncologyspecific, but it is very flexible.
Why patientreported outcomes data is key to healthcare quality. Performance measures are important tools for guiding, assessing, and incentivizing improvements in health care delivery and outcomes. Patient reported 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. Patientreported outcome measures proms are used to assess a patients health status at a particular point in time. 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. Posted on june 30, 2014 by hnoble last week i spent a couple of days in york, england exploring outcome measurement and valuation for health technology assessment with academics from the centre for health economics at the university of york. Exploring patient reported outcomes measures in healthcare. Standards for patientreported outcomebased performance. 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. Jan 29, 2019 the patientreported outcomes measurement information systems promis program has transitioned from the common fund. Randomized controlled trial using patient reported outcomes. To identify and classify pro instruments used to measure treatment effects in clinical trials evaluating nnrtis. Patient reported outcomes choosing appropriate metrics from.
In human immunodeficiency virus hiv, while pros are used in research, their application in clinical practice has been limited despite their potential utility. Designed to fill information gaps in traditional clinical quality measures, this data serves to measure how a treatment impacted a patients quality of life. Eligibility criteria required publications to a contain performance measures and information on the development or source of those measures, b be focused on the quality of healthcare for people with hiv, c be published in or after the year 2000, d reflect the us andor canadian healthcare systems, and e be published in english. Patient reported outcome instruments used in clinical trials of hiv infected adults on nnrtibased therapy. Definitions and key concepts for patientreported outcomes and measures key concept definition patient a person who is receiving health care services or using longterm health care support services. Importance of patient reported outcomes in cardiovascular. The use of patientreported outcome pro measures to provide. Analyzing principles of organizational performance management.
The concept of any report of the status of a patients health condition that comes directly from the patient or in some cases a caregiver or surrogate, without interpretation of the patients response by a clinician or anyone else. Pros are measures of how patients feel or what they are able to do as they are dealing with chronic diseases or conditions. Patient reported outcome measures, patientcentered care, health care evaluation. Sep 16, 2016 the use of patientreported outcome pro measures to provide added feedback to health providers is receiving interest as a means of improving clinical care and patient outcomes, and contributing to more patientcentered care. Selected measures of access to and utilization of treatment and prophylaxis for hivinfected persons. Can anyone suggest any standard book website online course publications for it. Jun 30, 2014 outcome measurement and valuation what is it and why do we need it. This is the second paper in a series of three papers on hiv outcomes beyond viral suppression.
Update on 2014 program outcome measures pom and related. How hospitals are using patientreported outcomes to. In some cases, using pre and postevent proms can help measure the impact of an intervention. Jan 06, 2012 randomized controlled trial using patient reported outcomes and care managers to improve hiv medication adherence in routine clinical care the safety and scientific validity of this study is the responsibility of the study sponsor and investigators. 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. At the group aggregated level, pro data can be incorporated into decision aids to inform. Patientreported outcomes pros are measures of how patients feel or what they.
Patient reported outcome instruments used in clinical trials. This book addresses the major methodological issues related to choosing, administering, and using patientreported outcomes pros, particularly in clinical practice settings. Sep 27, 2012 patient reported outcomes measurement information system. The leading health status instruments in human immunodeficiency virus hiv research are based on the pool of items developed as part of the medical outcomes study mos. This proposal has instigated a wider discussion about the use of patient reported outcomes pros to improve the treatment and care of an ageing hiv population with. We would like to show you a description here but the site wont allow us.
Her research focuses on development and application of patientreported outcome measures in research and practice. Patient reported outcomes pros should be comprehensively included in cardiovascular clinical trials using the best available tools, according to leading cardiologists and industry. The use of patientreported outcome pro measures to provide added feedback to health providers is receiving interest as a means of improving clinical car in human immunodeficiency virus hiv, while pros are used in research, their application in clinical practice has been limited despite their potential utility. July 05, 2017 patientreported outcomes measures proms are a fledgling clinical quality measure in the healthcare industry.
Inclusion of patients direct reports about how they feel and function in quality assessment programs through the use of patientreported outcomebased performance measures propms, and particularly in accountability and valuebased payment initiatives, would increase the patientcenteredness of these activities. Given the emphasis on using performance measures to improve health of people living with hiv, recipients may trend performance measure data over time and analyze the data for disparities in care. Applications of the medical outcomes study healthrelated. Mar 14, 2016 today, lets discuss how you can use outcome measurement tools to strongly showcase your patients progress and the success of your treatmentsspecifically by balancing the use of performancebased outcomes measures, selfreported ones, and hybrids. Patient reported outcomes patient reported outcome measures. Patient reported outcomes measurement information system and quality of life in neurological disorders measurement system to evaluate quality of life for children and adolescents with neurofibromatosis type 1 associated plexiform neurofibroma. Patient reported outcomes pros in performance measurement. We like to call this the outcome measure sweet spot. Patientreported outcome measures in the clinical setting. Update on 2014 program outcome measures pom and related issues. Patientcenteredness is a national interest in medicine. The use of patientreported outcome pro measures to provide added feedback to health providers is receiving interest as a means of improving clinical care and patient outcomes, and contributing to more patientcentered care.
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. To assess content validity and patient and provider prioritization of patient reported outcomes measurement information system promis depression, anxiety, fatigue, and alcohol use items in the context of clinical care for people living with hiv plwh, and to develop and assess new items as needed. Global progress is being made towards achieving the unaids 909090 hiv targets. Her research has involved comparative effectiveness and evidencebased practice, measurement of health status and quality of life, quality of care assessment, clinical practice guidelines, and related health policy issues. The measures include the sf20, moshiv, sf36, sf12, sf56, sf38 patient reported status and experience survey parse, sf21 and hiv cost and service utilization study. Promis patientreported outcomes measurement information system is a set of personcentered measures that evaluates and monitors physical, mental, and social health in adults and children. Assessment of family physicians performance using patient charts. Outcome measures performancebased, selfreported, hybrids. Patientreported outcome pro any information on the outcomes of health care. Clinicianreported outcome measures and outcomerelated performance. Oct 03, 20 patient reported outcomes pros may provide valuable information to clinicians and patients when choosing initial antiretroviral therapy. Multiple studies show that systematic monitoring of patients using pros improves patient clinician communication, clinician awareness of symptoms, symptom management, patient satisfaction, quality of life, and overall survival.
1564 1085 1476 162 47 1139 1019 1096 624 257 700 770 401 1595 852 131 1214 1200 146 1391 501 491 148 637 29 519 1432 975 26 669 638 1453 528 296 446 1128 305 446 419