The Patient-Centered Outcomes Research Institute (PCORI) has awarded Ethan Basch, MD, MSc, a five-year, $5.45 million grant to support research into whether there are clinical benefits of having people with cancer self-report their symptoms while undergoing treatment.
Basch, director of UNC Lineberger Comprehensive Cancer Center’s Cancer Outcomes Research Program, is a national leader in the study of patient-reported outcomes and technologies to measure the impact of interventions on patients’ experiences. He will conduct the research in conjunction with the Alliance for Clinical Trials in Oncology Foundation.
The national trial will investigate whether integrating patient-reported symptoms into care management can improve the patient’s quality of care and quality of life as well as measure the impact of patient self-reporting on the healthcare delivery system.
“Patients with metastatic cancer frequently experience symptoms that cause distress, disability, and lead to urgent care visits, and these symptoms often go unrecognized and unaddressed by clinicians even though there are many interventions that can provide relief,” said Basch, who is a professor in the UNC School of Medicine Division of Hematology and Oncology. “Sometimes this happens because patients did not have the opportunity to discuss symptoms at an office visit or the symptoms occurred between visits.”
Basch said enabling patients to report their own symptoms electronically at regular intervals could address this issue. A patient reporting severe symptoms can trigger clinicians to respond with interventions ranging from advice to prescriptions or triage for evaluation. Prior studies have found most patients willing and able to self-report symptoms during cancer care, and clinicians find this information valuable. Preliminary data suggest this approach leads to better patient quality of life, reduces emergency room and hospital visits, and may lengthen survival.
The researchers have developed a randomized trial to better understand the impact of patients self-reporting symptoms. In the intervention arm, patients are given the choice to use a secured internet site or an automated telephone system to regularly report 12 common symptoms. Email alerts will be sent to nurses when patients report severe or worsening symptoms. Nurses and patients will be provided with evidence-based symptom management recommendations. The trial’s control arm will not include symptom self-reporting, but nurses and patients will be provided with symptom management recommendations.
The outcomes being tracked include physical function, quality of life, survival, emergency room/hospital visits, and perspectives about relative benefits and burdens from patients, clinicians, and national organizations.
“Previous studies suggest that the benefits of patient-reported outcomes will justify the personnel and financial costs associated with the program, but a randomized trial is needed to to more clearly determine the impact patient-reported outcomes has on quality of care and the delivery of care,” said Basch.
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. For more information about PCORI’s funding, visit www.pcori.org.