Key points

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

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.