Multi-federal agency actions to integrate patient-reported outcomes into cancer research and care.

Abstract

Recognizing the need to improve care and outcomes for patients affected by cancer, federal agencies collaborated to identify current efforts and timely actions to support and empower cancer patients and caregivers. One important approach is to capture information directly from patients about their health, such as their symptoms and functioning. Patient-reported outcomes (PROs) can be used to inform clinical trials, in care delivery, and to examine treatment effectiveness and care quality. Across the Department of Health and Human Services and the Department of Veterans Affairs, multiple agencies have recognized the value of PROs for people with cancer and developed initiatives that complement extensive work spearheaded by academic and other non-governmental organizations. Given that there are efforts occurring within and across several federal agencies, there is a need to appraise and synergize federal efforts to support PRO adoption. Such an approach would promote methods to engage patients and caregivers, with specific efforts to address barriers for all cancer populations as well as encourage and support researchers, clinicians, and health systems to collect meaningful health information from all patients. This report describes the value of using PROs in research and healthcare settings to inform cancer care. Demonstrations of how federal agencies support PRO use are described. This manuscript is not exhaustive; and does not describe the extensive PRO work accomplished outside of the United States (US) government. Instead, it is intended to emphasize the independent commitment across federal agencies to support monitoring PROs for people with cancer to improve care and outcomes.