This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Patients with advanced cancer often have symptoms like pain, nausea, or difficulty breathing. Sometimes patients don’t get the chance to discuss their symptoms with their healthcare provider during a clinic visit. Other times, symptoms occur between clinic visits. In these cases, symptoms can cause patients distress and may lead them to seek urgent care. One solution to this problem is for clinics to ask patients to regularly report their symptoms. Reports of severe symptoms can then trigger providers to give advice or prescribe medicine to help with symptoms.
In this study, the research team is comparing two ways to improve quality and length of life and avoid urgent care visits in patients with advanced cancer. The first way is to give patients information on symptom management and help them report their symptoms, either online or by phone, between clinic visits. The second way is to give patients information on symptom management only.
Who can this research help?
Findings from this study may help patients with advanced cancer and their doctors address patients’ symptoms between visits. Results may also help cancer clinic directors decide whether to have patients with advanced cancer report symptoms between clinic visits.
What is the research team doing?
Fifty cancer clinics from a large US research network are taking part in this study. Adult patients with advanced cancer and nurses at all 50 sites receive a booklet on how to manage symptoms, based on research. They also get a link to a webpage with the same information.
The research team is assigning clinics to one of two groups by chance. In the first group of 25 clinics, the team is training patients to report 12 common symptoms online or over the telephone for up to one year. When a patient reports severe or worsening symptoms, clinic nurses receive an email alert; a provider may then reach out to the patient to discuss symptoms. The site research staff is recording any actions taken within 72 hours in response to the alert. When patients visit the clinics, their providers receive a chart of the symptoms they reported over the past 10 weeks.
The second group of 25 clinics is offering usual cancer care and symptom management information only.
Patients are completing surveys at the start of the study and every 3 months up to 12 months later. The surveys ask patients about their ability to do regular activities and how happy they are with their cancer care. They also ask about patients’ quality of life and urgent care use.
Patients with cancer and clinicians are helping to plan and carry out the study and design patient materials.
Research methods at a glance
Training and Education Interventions
- Mary Lou Smith, JD, Research Advocacy Network
- Patricia Spears, Cancer Information and Support Network
- Patrick Gavin, Chair, Alliance Patient Advocate Committee
- Jane Perlmutter, Patient Partner
- Cindy Geoghegan, Patients and Partners
Other Stakeholder Partners
- Tenbroeck Smith, MA, American Cancer Society (ACS)
- Robert Miller, MD, American Society of Clinical Oncology (ASCO)
- Robert Behrens, MD, Alliance for Clinical Trials in Oncology (Community Oncology Committee)
- Lisa Kottschade, RN, CNP, Alliance for Clinical Trials in Oncology (Nursing Committee)
- Jon Strasser, MD, Alliance for Clinical Trials in Oncology (Community Oncology Committee)
- Deborah Bruner, RN, PhD, Emory University
- David Cella, PhD, Northwestern University
- Charles Cleeland, PhD, MD Anderson Cancer Center
- Anne Chiang, MD, PhD, Yale University
- AmyLou Dueck, PhD, Mayo Arizona
- Barbara Given, PhD, RN, Michigan State University
- Jennifer Malin, MD, PhD, Anthem, Inc.
- Michael Neuss, MD, Vanderbilt-Ingram Cancer Center
- Deborah Schrag, MD, MPH, Dana-Farber/Harvard University
- Claire Snyder, PhD, Johns Hopkins University
- Bryan Weiner, University of Washington