Challenges and Opportunities in Using Patient-reported Outcomes in Quality Measurement in Rheumatology




Use of patient-reported outcome measures (PROs) in rheumatology research is widespread, but use of PRO data to evaluate the quality of rheumatologic care delivered is less well established. This article reviews the use of PROs in assessing health care quality, and highlights challenges and opportunities specific to their use in rheumatology quality measurement. It first explores other countries’ experiences collecting and evaluating national PRO data to assess quality of care. It describes the current use of PROs as quality measures in rheumatology, and frames an agenda for future work supporting development of meaningful quality measures based on PROs.


Key points








  • The health care landscape in the United States is likely shifting to a model in which health systems will be reimbursed for the quality of care they provide, and developing valid, responsive, and meaningful patient-centered measures is key.



  • How best to incorporate patient-reported outcome measures (PROs) in assessments of health care quality in rheumatology is underexplored.



  • Experiences with widespread use of PROs in Sweden and the United Kingdom, and in smaller health systems within the United States, provide valuable lessons about challenges and opportunities in using PROs to assess quality.



  • Major challenges include developing sufficient information technology infrastructure to collect data from diverse medical records and diverse patients; need for better understanding of PRO reliability, validity, and responsiveness; determining that PROs are responsive to changes in the health care environment; clarifying the role of case-mix adjustment; and understanding how measures should be summarized and reported to stakeholders.






Introduction


Quality measures provide important insight into variability or problems within structures of care, processes of care, or outcomes of care. Patient-reported outcomes (PROs) provide valuable information on patients’ health-related quality of life, and can be used to facilitate shared decision making in the clinical setting, for comparative effectiveness research, for adverse event reporting, and in quality assessment. However, use of PRO measures as indicators of health care quality and accountability is a new, and growing, area in the United States.


Following passage of the Patient Protection and Affordable Care Act in 2010, there has been a growing emphasis on improving performance and accountability of health care systems and individuals. Recent legislation, the Medicare Access and CHIP (Children’s Health Insurance Program) Reauthorization Act of 2015, supports a shift in physician reimbursement via a merit-based incentive payment system (MIPS), in which physicians and systems will be judged and reimbursed partly based on the quality of care they provide. Appropriate selection of measures that define quality, particularly measures that matter to beneficiaries of care, will be critical to the success of MIPS.


Given increased recognition that patient engagement and inclusion of the patient’s voice are critical to the success of a high-quality, affordable health system, incorporating measures that reflect the patient’s direct report about how they feel and function into measures that evaluate quality of care is essential. However, there are several challenges to using PRO measures to assess performance and accountability, and how best to do this in rheumatology has yet to be defined.


This article discusses the role of structure, process, and outcome measures of health care quality using PROs, reviews European countries’ experiences collecting and evaluating national PRO data to assess quality of care, describes the current use of PROs as quality measures in rheumatology, and frames an agenda for future work supporting the development of meaningful quality measures based on PROs.




Introduction


Quality measures provide important insight into variability or problems within structures of care, processes of care, or outcomes of care. Patient-reported outcomes (PROs) provide valuable information on patients’ health-related quality of life, and can be used to facilitate shared decision making in the clinical setting, for comparative effectiveness research, for adverse event reporting, and in quality assessment. However, use of PRO measures as indicators of health care quality and accountability is a new, and growing, area in the United States.


Following passage of the Patient Protection and Affordable Care Act in 2010, there has been a growing emphasis on improving performance and accountability of health care systems and individuals. Recent legislation, the Medicare Access and CHIP (Children’s Health Insurance Program) Reauthorization Act of 2015, supports a shift in physician reimbursement via a merit-based incentive payment system (MIPS), in which physicians and systems will be judged and reimbursed partly based on the quality of care they provide. Appropriate selection of measures that define quality, particularly measures that matter to beneficiaries of care, will be critical to the success of MIPS.


Given increased recognition that patient engagement and inclusion of the patient’s voice are critical to the success of a high-quality, affordable health system, incorporating measures that reflect the patient’s direct report about how they feel and function into measures that evaluate quality of care is essential. However, there are several challenges to using PRO measures to assess performance and accountability, and how best to do this in rheumatology has yet to be defined.


This article discusses the role of structure, process, and outcome measures of health care quality using PROs, reviews European countries’ experiences collecting and evaluating national PRO data to assess quality of care, describes the current use of PROs as quality measures in rheumatology, and frames an agenda for future work supporting the development of meaningful quality measures based on PROs.




Structure, process, and outcome: patient-reported outcome measures as indicators of health care quality


The ability to understand the quality of health care, defined by the Institute of Medicine as “the degree to which health care services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge, ” is fundamentally linked to how quality is defined and measured. Quality measures that use PROs can address health care structures, processes, and outcomes, and there are important strengths and limitations to measuring each of these categories.


PRO outcome measures attempt to evaluate the ultimate impact of care provided, and thus are sought-after metrics of health care quality. Outcomes can be measured at the individual level or aggregated by provider, practice, institution, organization, or region. Aggregating PRO outcomes data at the level of the health care system could theoretically identify poor performers and makes it possible for individuals to compare performance between health systems, driving accountability. However, with each level of aggregation, information about the processes and environments of care that contributed to a high or low score may become more difficult to identify.


Although outcome-based quality measures are preferred by the Centers for Medicare and Medicaid Services, they provide limited information about the processes of care that lead to an outcome. PRO outcome measures might therefore show what needs to be improved, not how to do so. By contrast, process measures using PROs (eg, whether a PRO was completed and scored, or shared with a patient) may be more actionable, and, as such, more conducive to iterative quality improvement strategies. However, process measures may not map well to outcomes. This finding often reflects the presence of unmeasured factors that affect outcomes, such as socioeconomic determinants of health, which can be difficult to account for but are also often more difficult to change. The complex relationship between processes and outcomes does not invalidate process measures; it indicates the value in measuring both to understand quality and drive quality improvement. Thus, PROs are critically important in that they bring patients’ voices to the fore, but inherently problematic in that clinicians do not measure or fully understand all the potentially modifiable processes of care that affect these outcomes.


The movement to use PROs as metrics of health care quality is underway. The National Quality Forum recently defined a new category of performance measures “based on PRO data aggregated for an accountable health care entity” called PRO performance measures (PRO-PMs), and delineated a pathway for their endorsement. Although use of PRO-PMs has gained some initial traction in oncology and mental health, evidence directly linking collection of PRO measures to improvements in provider performance is conflicting or lacking. In addition, little is understood about the relationship between PROs and the processes of care that modulate them.




National health systems and patient-reported outcomes measurement: experiences and lessons learned from Sweden and the United Kingdom


Sweden


National quality registers (NQRs), population-level clinical quality databases, have existed in Sweden since 1975. With the creation of NQRs, the infrastructure to collect population-level data to better understand the connection between health care processes and disease was created. Data from NQRs are aggregated and publicly reported for use in benchmarking and to develop guidelines and patient information. Most (87%) NQRs collect PRO data, and about 20% of these report using patient-reported data for local quality improvement work. PRO data from NQRs have been used to support patient-centered continuous process improvement, but participation in NQRs is voluntary and hospitals are not remunerated on the basis of PRO measure data.


The experience of the Swedish Rheumatology Quality Registry, created in 1995, highlights several important practical challenges and successes in using PRO data to improve the care of patients with rheumatoid arthritis (RA). Between 1995 and 2009, iterative improvement cycles were used to facilitate widespread use of the quality register, with 29,000 patients from 60 clinics registered by 2009. Initially, paper forms were used for data collection, and data collected were redundant with data from the health record. Providers were frustrated with the time required to complete information for the register, which detracted from patient care. With improvements in technology and work flow, the process was streamlined: patients complete an electronic questionnaire assessing self-reported health (pain, global health, daily function, and tender and swollen joints). This information is then given to the clinician, updated during the encounter, and returned to the patient. Thus, the physician and the patient see and analyze changes in disease activity together. Patient and provider satisfaction have improved, as have providers’ understanding of patients’ medication-taking behaviors, because patients have been more forthcoming about medication adherence while reviewing trends in disease activity.


Data on PROs are aggregated at the provider, clinic, and hospital level, and are publicly reported. Thus data are used to understand which hospitals in Sweden have the lowest or highest PRO disease activity measures, which hospitals have the greatest decrease in PRO disease activity measures over defined time periods, and how certain PRO measures change over time. Data are also aggregated regionally to stimulate comparisons and create and open conversation about health care cost, although no data yet support the efficacy of this strategy.


Because of the breadth and depth of PRO data collected, Sweden is uniquely positioned to understand how PRO measures change over time, and, specifically, how much variation in measurement is related to patient or health system factors, or reflects natural variation, and thus, the extent to which these measures are valid indicators of health system performance. It is critical that this kind of work be done in a system in which evaluation is separate from remuneration. However, lessons about aggregate PRO data may be specific to the Swedish health care system and population, and less applicable to countries with lower literacy levels, greater racial and ethnic diversity, and multiple languages spoken.


United Kingdom


In contrast with Sweden, where formation of NQRs and collection of PROs are voluntary, gathering PRO data in United Kingdom is a government mandate. In 2010, the National Health Service (NHS) unveiled an outcomes framework outlining a performance model emphasizing health outcomes, in which PRO measures are used to facilitate comparison of providers, improve accountability, and motivate improvements in quality. PROs are also being used to help align patient and physician goals of care and treatment plans, such as the use of serial PRO measures in patients considering hip replacement. Engaging in shared decision making and providing value-aligned care are processes that indicate high-quality care. However, a provider’s aggregated PRO measure does not indicate whether value-aligned care is being provided.


Several unique challenges have arisen in the United Kingdom as a result of widespread mandatory implementation of PRO data collection. For example, the logistic burden and cost of creating the information technology infrastructure to support PRO data collection and analysis are significant. Furthermore, different patient populations may be less responsive to Web-based questionnaires, such as those who are elderly. Capturing a broad spectrum of patients with a wide range of PRO responses is critical to ensuring measure validity, thus including both the sickest and most vulnerable patients, as well as patients who are most healthy but do not interact with the health care system, will be key.


Because the United Kingdom is using PRO data to make determinations about the quality of care with financial repercussions, there have been specific challenges related to the ability (or failure) to attribute PROs to the quality of care provided. Difficulties understanding when PRO variability reflects true change and when it reflects normal variation, understanding how best to use case-mix adjustment, how to define the reporting period, how to aggregate and report the data to different stakeholders, how to decide what constitutes unacceptable performance, and how to avoid misuse or misinterpretation of data are additional challenges. Therefore, the work to date suggests that far more experience with these measures is needed before they create value for patients and for the NHS.




Quality registries in rheumatology: the United States experience with patient-reported outcomes as quality measures


Based on our systematic review of the literature (detailed in Appendix 1 ), evidence supporting the use of PRO measures in rheumatic disease care in the United States is scarce. However, the experience at Geisinger Health System shows that collection of PROs in a busy rheumatology clinic is feasible, is associated with high-quality processes of care, and may improve outcomes.


In a recent evaluation of an electronic health record (EHR) optimized for rheumatology practice, Newman and colleagues tracked 14 clinicians, nearly 6700 patients, and data from almost 20,000 encounters over a 2-year period within the Geisinger Health System in eastern Pennsylvania. The EHR, Rheum-PACER (Patient-Centered Electronic Redesign), captures, aggregates, and displays patient-reported measures of disease activity, physical function, and pain. Although the primary aim of the study was to evaluate the impact of the software on physician productivity and efficiency, the investigators also reported a modest but significant correlation ( r = 0.59) between physicians’ use of the software and disease control in patients with RA, defined as Clinical Disease Activity Index (CDAI), a composite outcome measure that includes a patient-reported component, of less than or equal to 10. In addition, they showed a small (3%) but significant trend of increasing numbers of patients with controlled disease (CDAI ≤10) over time. Use of the EHR was associated with process improvements (chart review and documentation time decreased and productivity increased); patient adherence, activation, and satisfaction scores were high at baseline and did not change.


Building infrastructure to collect PRO data from a large and diverse network of rheumatology practices in the United States will help create large data sets that will yield important information about the opportunities and challenges of using PROs for quality measurement in clinical settings. The American College of Rheumatology (ACR) national registry, Rheumatology Informatics System for Effectiveness (RISE), the Veterans Affairs Rheumatoid Arthritis registry, and quality networks like the Pediatric Rheumatology Clinical Outcomes and Improvement Network have made progress in building this infrastructure and accumulating data on PROs will continue to support and inform future quality measurement efforts.

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Sep 28, 2017 | Posted by in RHEUMATOLOGY | Comments Off on Challenges and Opportunities in Using Patient-reported Outcomes in Quality Measurement in Rheumatology

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