Don’t Ask Patients About Their Symptoms—Have Them Tell You
“How are you doing?” We ask this question of our patients repeatedly: at diagnosis, during treatment, throughout survivorship, and at end of life. However, studies show that patients often give inaccurate answers to that direct question.
Instead, the concept of patient-reported outcomes (PROs) solicits self-reported information by giving patients an opportunity to tell us how they are doing. PROs may be collected as simply as a one-page assessment form that patients complete prior to being seen by a nurse or provider or as sophisticated as a fully integrated electronic health record PRO measure (PROM) or application.
What Are PROs?
Designed to provide a direct measurement of a patient’s experience using validated scales assessing patient-centered constructs, including symptom burden, mood, physical function, quality of life, and distress, most PRO questions ask patients to rate how much a specific symptom or concern affects them and allows them to ask for information on managing it.
How Are PROs Used in Cancer Care?
Implementing PROs into routine care of patients with cancer has been shown to improve quality of life, psychological and physical impact of illness, unplanned hospital visits and admissions, and overall survival. Several studies have focused on the unique challenges of implementing PROMs into an electronic health record and highlighted approaches to increase adoption and integration into routine clinical care.
Currently, two PRO questionnaires are publicly available (see sidebar). The National Cancer Institute’s Patient Reported Outcomes–Common Terminology Criteria for Adverse Events allows patients in cancer clinical trials to report symptomatic toxicities, and PROMIS (Patient-Reported Outcomes Measurement Information System) is for any person to self-report their physical, mental, and social health.
Several mobile applications (often called ePROs) are being launched for patients to report symptoms and receive immediate management recommendations. ePROs also allow the care team to monitor, track, and trend a patient’s symptom severity over time to measure well-being and manage side effects between treatment cycles.
What Is the Future for PROs in Health Care?
Innovations to collect and respond to PROs represent an exciting intersection of clinical care and informatics. Monitoring PROs helps oncology nurses to guide patients through the complexity of cancer care while also implementing expert, evidence-based interventions in user-friendly applications. It is a significant step forward in the delivery of quality cancer care across many oncology settings.