The Hutchinson Institute for Cancer Outcomes Research recently held its 6th Annual Value in Cancer Care Summit. The morning plenary session was given by Deborah Schrag, MD, MPH, Dana-Farber Cancer Institute, entitled “Collecting Patient Reported Outcomes to Improve Cancer Care.”
Dr. Schrag began her talk by reminding the audience that a patient reported outcome (PROs) is “any report of the status of a patient’s health condition that comes directly from the patient – without interpretation of the patient’s response by a clinician or anyone else.” While there are many types of PROs, Dr. Schrag’s work focuses on those related to symptoms and side effects. PROs are not only important for clinicians to understand real world experiences and determine the right course of treatment for patients, but they can also play a role for future patients.
The Purpose of Patient Reported Outcomes
She explained that patients often want to know if a particular treatment is “worth it” and to determine that you have to take into account many factors: cost and impact on survival, but also toxicities and quality of life. Since those are harder to track and quantify, it’s another way PROs can be a powerful tool.
Next, Dr, Schrag outlined the barriers to PROs when it comes to symptom management, which included:
- The general thinking is that symptoms are inevitable, necessary
- A fear that treatment will be withheld if side effects are reported
- Patients want to impress clinicians and may feel a stigma against complaining
- Clinicians have limited time
- There may be challenges reaching or knowing how to reach the care team
Even for clinical trials, symptom reporting can be inaccurate – suffering is simply hard to measure.
The Power of Patient Reported Outcomes
She described her research efforts from the last decade and her hope to make symptom management proactive rather than reactive. In three separate efforts, the results were promising. By asking patients to report their symptoms on a regular basis works, it improved patient satisfaction and outcomes.
In her research efforts, she also found that PROs can work in another way. One effort took 400 pairs of patients and clinicians to compare how they rated the severity of symptoms. In many cases, patients rated their symptoms worse than what the clinician reported. When clinicians were presented with the PROs, they changed their report in the majority of cases to match the patient’s assessment. She concluded that clinicians believe their patients – they just often don’t have access to PROs.
In an on-going trial, Dr. Schrag described two groups receiving different treatments that have similar efficacies. By capturing PROs, it was determined that one treatment causes significant neuropathy and the other diarrhea. So if your patients is a violinist or a long haul truck driver, understanding PROs like this could help you decide on the treatment that would be right for your patient and their quality of life.
Incorporating Patient Reported Outcomes into Routine Care
Dr. Schrag advocated incorporating PROs into routine care. There is a concern from clinicians that they will be drowning in PROs and won’t be able to manage all of the reports, but her research findings indicate that severe side effects are the minority of PROs and they are often actionable. She also pointed out the near-ubiquitous presence of smartphones, which can be a natural platform to collect information in a seamless and convenient way. Her abundant research makes her confident: patients will report and clinicians will listen.
At Navigating Cancer, we believe in the potential of PROs and have developed Health Tracker, a remote monitoring tool, to help support patients with both medication adherence as well as symptom management. This simple tool helps reduce barriers for patients to report their health status. It prompts them to let the care team know what’s happening and our digital platform puts those PROs in order of severity reported. The care team can leverage a more proactive model of care and give patients the support they need during treatment.