To many in the scientific community, using measures that are collected from patient report rather than scientific instruments is considered “soft science”, implying that data gathered from the human beings we care for cannot be trusted as it comes from an unreliable source that can skew study outcomes. My view is that we won’t understand or be able to improve a cancer patient’s experience unless we ask them about it, and they have little incentive to lie. How can asking patients what hurts and addressing it be less important than measuring blood pressure and starting a medication to manage hypertension? It is from this perspective that I viewed Ethan Basch’s plenary session at ASCO 2017 reporting on the effect of routinely measuring patient reported outcomes on quality of life and health outcomes.
In his group’s study, Dr. Basch and colleagues randomized patients with cancer starting chemotherapy to receive standard monitoring and follow up versus routine completion of patient-reported outcome measures (PROMs) once weekly between clinic visits. The outcomes assessed were quality of life outcomes, including depression, anxiety, and general quality of life, and objective outcomes, such as hospital admissions, emergency room visits, and survival. The group hypothesized that more frequent communication between patients and the health care team would lead to better quality of life from more proactive symptom management, and to fewer hospitalizations and emergency room visits. Patients were stratified by computer experience because PROMs were surveys for patients to complete online.
In all 766 patients with genitourinary (32%), gynecologic (23%), breast (19%), and lung cancer (26%) were randomized to standard monitoring vs completing PROMs between visits from September 2007 and January 2011. In a previous manuscript, Dr. Basch reported that a greater number of patients completing PROMs had improvements in quality of life (QOL) between baseline and 6 months (34% vs 18% in PROM group vs standard monitoring, respectively, p<0.001) and fewer patients in the PROM group experienced worsening QOL between baseline and 6 months (38% vs 53% in the PROM group vs standard monitoring, respectively, p<0.001)1. They also reported that fewer patients completing PROMs visited the emergency department than those receiving standard care (34% vs 41%, p=0.02), and there was a trend towards fewer patients completing PROMs being admitted to the hospital when compared with standard care (45% vs 48%, p=0.08)1. At the ASCO plenary, Dr. Basch reported that overall survival was approximately 5 months longer in the patients completing PROMs as compared with patients receiving standard care (OS 31.2 mo vs 26 mo in the patients completing PROMs vs standard monitoring, respectively, p=0.03). In a multivariable model including clinical and sociodemographic characteristics of patients, mortality was 17% lower for patients completing PROMs (HR 0.832, p=0.04). In the previously reported outcomes, patients without computer experience appeared to experience the greatest benefit.1
So what does this mean? This “soft science” intervention (following patient-reported outcomes to monitor quality of life and intervene in patients who experience complaints) improved hard outcomes (emergency room and hospital admissions, and overall survival), demonstrating clear benefit to patients in all outcomes assessed. What is more, the survival benefit came with improved quality of life and reduced health care expenditures for multiple solid tumors. Toxic therapeutics directed at single solid tumors have been approved for a smaller survival benefit, with side effects that typically include some risk of hospitalization and mortality. If the system that Dr. Basch and his team put into place could be delivered as easily as prescribing a pill, I believe it would have been awarded breakthrough therapy designation and may already have FDA approval.
Several colleagues have asked whether we are doing such a poor job at symptom management that we are hastening death in our patients based on the study’s findings. In response to this, I would say that we are not harming our patients so much as missing an opportunity to help them more. Anyone in practice long enough has experience with catastrophic cases that end up with hospital admissions, and we routinely search our memories to understand where we could have intervened sooner. For every one of these cases, I would wager there are 9 others who suffered unnecessarily from nausea, felt unaddressed depression, or had anxiety about financial issues or care coordination that we could have tackled sooner, too. We owe it to our patients and ourselves to challenge the status quo and provide ongoing support and compassionate care to each of the men and women we treat, whether the concerns are big or relatively easy to resolve. While we aren’t causing harm, it is clear that we could be providing better care if we chose to do so in a systematic way like that described in Dr. Basch’s study.
In a system that rewards ever-shorter clinic visits and fast-acting pharmaceuticals, implementing a system that includes continuous clinical monitoring, telephone counseling, and psychosocial support interventions, all integrated into the electronic medical record, will be challenging. To succeed, these challenges must not be merely acknowledged, but must be attacked head-on. Some payer systems, particularly the Oncology Care Model (OCM) of the Medicare system, seem to be moving in a direction that will support efforts to reduce hospital-based cancer care costs and reimburse for care associated with higher patient satisfaction. This type of model may need to become commonplace rather than unique if we seek to provide care that both prolongs life and improves quality of life through addressing patient symptoms and concerns as was accomplished with this intervention.
I am not surprised by this data, and am heartened to see that it was not only presented at ASCO, but awarded a plenary session. It is time that “soft science” that tackles hard problems, like living longer and better, is given its due. Not all problems can be solved by genomic testing, targeted therapies, or checkpoint inhibition. This study demonstrates that, by building on work by others, including the landmark Temel study demonstrating that providing early palliative care to patients with lung cancer prolongs life, likely because of improved symptom management resulting in better quality of life and fewer medical complications.2 Symptom management matters, at least as much as prescribing chemotherapy. As a researcher and clinician who seeks to know the patient’s voice as well as his vital signs, I will continue to advocate for initiatives that support systematic monitoring of patient-reported outcomes in clinical care until the process is commonplace. Until there is a pill for compassion and attentiveness to our patient’s concerns that lengthens survival and improves quality of life, I recommend a little more “soft science” in all of our practices.
Written by: Alicia Morgans, MD, MPH, Associate Professor of Medicine, Division of Hematology/Oncology, Northwestern University Feinberg School of Medicine, Chicago, Illinois
Published Date: June 20th, 2017
- Basch E, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol, 2015; 34:557-65.
- Temel JS, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010 363(8):733-42.
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