The Growing Case for Routine Collection of Patient-Reported Outcomes

Abstract

The clinical history elicited during the patient visit is traditionally viewed as the most important source of medical information, 1,2 particularly for patients with heart failure. 3 As medical students, we learned that although the patient is the source of the data, the expert clinician knows what is relevant and how best to integrate the patient's information to determine diagnosis and prognosis. With the move toward patient-centered care came a greater interest in the symptoms reported directly by the patient. Payers have increasingly sought the patient voice in measuring outcomes of care. In 2017, the Centers for Medicare & Medicaid Services launched the Meaningful Measures initiative, which identified high priority areas for quality measurement through use of patient-reported outcome (PRO) measures. 4 The Centers for Medicare & Medicaid Services programs will prioritize PRO measures based on data that are collected directly from the patient or surrogate using a PRO instrument, scale, or single-item measure. 4 Patient-reported data are typically viewed as complimentary to the history obtained by the clinician, providing unique information on how symptoms are associated with overall quality of life. However, the clinician-reported outcome is still viewed as the source of medical truth. In heart failure care, the primary clinician-reported outcome is the New York Heart Association (NYHA) class, which is used to summarize severity of illness, estimate prognosis, and determine candidacy for certain life-prolonging therapies.However, a growing number of studies have provided evidence that PROs often conflict with clinician-reported outcomes. Following irradiation, patients reported on a questionnaire more pain than clinicians reported after taking the patients' medical history. 5 Among outpatients with coronary artery disease who reported angina in the previous month, 42% were felt to have less or no angina by their physician. 6 Most of the variation in underrecognition of angina by physicians was unrelated to patient and physician characteristics. However, there was a surprisingly large variation in underrecognition across physicians (0%-86% of those with at least 5 patients), suggesting different abilities by physicians in angina assessment. 6 In another study of 201 patients with stable angina occurring weekly, the clinician documented no angina in 7.5% of these patients. 7 By contrast, among 367 patients stating on a PRO that they were angina-free after percutaneous coronary intervention, clinicians noted moderate or severe angina in 104 patients (28%). 7

Impact of Patient-Reported Outcome Measurement in Heart Failure Clinic on Clinician Health Status Assessment and Patient Experience: A Substudy of the PRO-HF Trial

“…1–3 Patient-reported outcome (PRO) measures have been proposed to improve the patient-centeredness of care. 4,5 Patient-reported health status has been shown to better detect clinically meaningful changes in clinical practice and to better predict subsequent clinical events than NYHA Class. 6,7 The reliability and prognostic value of PROs has led to their increasing inclusion as clinical trial end points, 8–10 and there has been expanding interest in implementing PROs in routine care.…”

“…6,7 The reliability and prognostic value of PROs has led to their increasing inclusion as clinical trial end points, [8][9][10] and there has been expanding interest in implementing PROs in routine care. 4,5 The 2022 American College of Cardiology/American Heart Association Heart Failure Clinical Practice Guidelines provided further momentum for this change by including a new 2A recommendation to incorporate patient-reported health status into routine HF care. 5 However, the uptake of PROs as part of standard HF care has been slow and evidence of their value in routine practice is sparse.…”

Do PRO Measures Function the Same Way for all Individuals With Heart Failure?

“…PROs provide direct information about patients' health status without interpretation from anyone else. 1 In HF, PROs provide important information complementary to clinical measures, patientdefined outcomes, 44 and clinician-reported outcome measures such as New York Heart Association class 45 in the care of patients with HF. 46 It is critical that patients interpret the PRO questions similarly because PRO measures provide unique information in clinical research.…”

Patient Perspectives on the Burden of Heart Failure with Preserved Ejection Fraction in a US Commercially Insured and Medicare Advantage Population: A Survey Study

“…Keeping the burden associated with the collection of PROMs at a minimum may facilitate their routine collection and use by clinicians. 25 …”