Historically, with the exception of collecting feedback on satisfaction or experience with care, patients remain an untapped resource in assessing the quality of healthcare and of long-term support services. Patients are a valuable and, arguably, the authoritative source of information on outcomes beyond experience with care. These include health-related quality of life, functional status, symptom and symptom burden, and health behaviors. For example, in the case of long-term support services for persons with disabilities, asking them about outcomes they value, such as increased communication and self-help skills and improved social interactions is crucial. Hence, two critical steps are to engage patients by building capacity and infrastructure to capture patient-reported outcomes routinely and then to use these data to develop performance measures to allow for accurate appraisals of quality and efficiency.
Patient-reported outcomes (PROs) are defined as “any report of the status of a patient’s (or person’s) health condition, health behavior, or experience with healthcare that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.”15 “PRO” has become an international term of art; the word “patient” is intended to be inclusive of all persons, including patients, families, caregivers, and consumers more broadly. It is intended as well to cover all persons receiving support services, such as those with disabilities. Key PRO domains include:
Various tools (e.g., instruments, scales, single-item measures) that enable researchers, administrators, or others to assess patient-reported health status for physical, mental, and social well-being are referred to as PRO measures (PROMs). In order to include PROs more systematically as an essential component of assessing the quality of care or services provided, and as part of accountability programs such a value-based purchasing or public reporting, it is necessary to distinguish between PROMs (i.e., tools) and aggregate-level performance measures.
A PRO-based performance measure (PRO-PM) is based on PRO data aggregated for an entity deemed as accountable for the quality of care or services delivered. Such entities can include (but would not be limited to) long-term support services providers, hospitals, physician practices, or accountable care organizations (ACOs). NQF endorses PRO-PMs for purposes of performance improvement and accountability; NQF does not endorse the PROMs alone. However, the specific PROM(s) used in a PRO-PM will be identified in the detailed measure specifications to ensure standardization and comparability of performance results.
NQF’s 2012 project on PROs in Performance Measures brought together a diverse set of stakeholders who could facilitate the groundwork for developing, testing, endorsing and implementing PRO-PMs. This project provided a forum for dialogue among numerous and diverse stakeholders to address difficult conceptual, methodological, and practical issues. The aim was to hasten the endorsement and ultimately the implementation of PRO-based performance measures for use in accountability programs and performance improvement initiatives. The project report, Patient Reported Outcomes (PROs) in Performance Measurement, provides recommendations to move the field of performance measurement forward. The guiding principles articulated in the report and the detailed pathway of taking a PRO to a PRO-PM are intended to steer work in the field in ways that help to ensure a more person-centered approach.
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