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July 2017 VOL 8, NO 7
Patient-Reported Outcomes: Bringing the Patient Voice into Care Delivery and Quality Assessment
The term “patient-reported outcome” (PRO) has become ubiquitous in the realm of cancer care. According to Ethan Basch, MD, MSc, PROs are still in the early stages of being integrated into quality assessment programs and routine clinical practice, but engaging patients through PROs can be an invaluable tool for assessing and improving the conduct and quality of symptom management, he said at the 2017 American Society of Clinical Oncology (ASCO) Quality Care Symposium.
The general working definition of a PRO is “a direct self-report of a symptom, physical functioning, or overall ‘quality of life’ by a patient (or caregiver).” PROs have traditionally been used in drug development, but recently there has been a burgeoning and strong interest in integrating them into clinical practice, he said.
The Upsurge in PRO-PMs
Demonstrating this burgeoning interest is the increased use of PRO performance measures (PRO-PMs), or performance measures based on PRO data aggregated for an accountable healthcare entity (eg, percentage of patients in an accountable care organization whose depression score as measured by the PHQ-9—a standardized tool to assess depression—improved). According to Dr Basch, Director of the Cancer Outcomes Research Program and Professor in the Division of Hematology and Oncology at the University of North Carolina (UNC)-Chapel Hill Department of Medicine, a defined pathway with well-established methods exists to aid oncology providers in the development of their own PRO-PMs.
This pathway begins with the identification of a problem that is best evaluated by a PRO. “If one is interested in understanding the experience of patients with pain, it is patients who are in the best position to self-report that information,” he said. Next, identify or develop PRO measures that are meaningful, valid, reliable in the setting of interest, and available for use.
Importantly, make sure that the measure of interest is actionable, or changeable based on practice, he stressed. “Although a measure may be important to understand, if it is not actionable, it might not be amenable to assessment in a quality program,” he said. Finally, test the feasibility of data collection, as PRO-PMs differ from the conventional metrics used in performance evaluation. “This information is collected directly from patients, so engaging them is a key component of rolling out these kinds of programs,” he added.
Why Use PRO-PMs in Oncology?
“Symptom management is a cornerstone of cancer care and an essential function of our jobs,” he said. “There are clinical practice guideline recommendations and pathways with best practices for managing numerous symptoms, and there are clear expectations regarding how we should do that.” He said that poor symptom management is poor quality care, and to understand symptom management in the context of quality care, providers must go to the source: the patient.
In 2014, ASCO convened a PRO committee with several charges, the most direct of which was the development of outcome and process measure specifications for PRO-PMs in oncology, which, in the future, may be used to assess quality within ASCO’s Quality Oncology Practice Initiative. For example, the outcome measure defined as the percentage of patients receiving moderately/highly emetogenic chemotherapy with moderate or worse nausea 1 week after treatment (±3 days), came directly from the ASCO antiemetics guideline, “but it calls upon patient self-reporting to understand guideline effectiveness in practice,” he explained.
Other outcome measure specifications developed by the ASCO PRO committee include percentage of patients with metastatic cancer with moderate or worse pain, and percentage of patients receiving systemic cancer treatment with moderate or worse constipation. An example of a PRO-based process measure specification is the percentage of patients receiving systemic cancer treatment who provide self-reported symptoms 1 week following chemotherapy (±3 days). These measure specifications are currently being tested in a number of contexts, including an ongoing implementation pilot at multiple practices in Minnesota, and a Patient-Centered Outcomes Research Institute–funded ASCO/UNC project that involves interviews with stakeholders to elicit their impressions around PRO-PMs in oncology, followed by implementation at 5 sites to test feasibility and collect data for adjustment variables.
PROs are still in the early stages of development but are of increasing interest to administrators as a means to avoid unnecessary emergency department and hospital visits due to poorly controlled symptoms. “Good symptom management can decrease utilization and cost, and methods exist to implement PRO programs, so consider this for your practice,” said Dr Basch.
The lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) community has recently been recognized by the National Institutes of Health and the Centers for Disease Control and Prevention (CDC) as suffering [ Read More ]