My mother may have won her battle against cancer, but I saw firsthand the toll different treatments took on her quality of life—from physical and mental pain to fatigue. I also quickly learned that the healthcare system did not have a systematic way of tracking how patients like my mom feel and function during and after treatment—what the medical field refers to as patient-reported outcomes (PROs).
Since then, two powerful forces in healthcare have emerged with the potential to change this reality. First, precision medicine has accelerated the adoption of targeted therapies that are offering new hope to patients—treatments that can be more tolerable and effective than traditional chemotherapy. Second, we have entered a value-based care era, with a focus on delivering improved outcomes at lower costs.
Patient-reported outcomes are vital to both of these initiatives. If we are to make cancer care more personalized, we must understand how treatments impact quality of life. We must begin to answer the question: Are the outcomes we are striving for aligned with the goals and stated values of the patient sitting before us?
Traditional outcome measures such as overall survival allow us to discuss a given treatment’s potential to extend life, but lacking is the language to objectively discuss what the quality of that additional time will be. To do that, the healthcare ecosystem needs to collaborate to better incorporate PROs into the clinical setting.
PROs capture the reactions to and side effects of treatments—the quality-of-life issues that are the very reason many patients seek care. They help patients understand: How will I feel when I am getting this treatment? Will I be able to continue my daily routine? Will I be able to work during treatment? How long should I expect these side effects to last? They also provide a language for providers, the scientific community, and drug makers to objectively discuss quality-of-life issues when de-identified data is shared and evaluated in aggregate.
Interest in PROs is growing, but their impact on precision oncology is still largely unexplored. Traditionally, precision oncology has referred to a treatment regimen based on a patient’s genes, often alongside the patient’s clinical profile and other environmental factors that help doctors better assess the efficacy of treatments.
The next step must be to more systematically track PROs and make them a standard part of the clinical decision-making process.
Because of the very nature of precision treatments, they will affect different people in different ways. People, based on their environment, profession, and other factors, will have varying tolerance levels for certain side effects. Someone who works as a piano teacher or craftsman may have a much lower tolerance for say, numbness in their fingers, than someone who does not work with their hands.
The mere act of tracking PROs and surfacing them to a physician can have a significant clinical impact on the patient. PROs, when combined with clinical and genomic data, can help oncologists make more informed treatment decisions—both before and during treatment. For instance, certain symptoms can alert a physician that they need to adjust a patient’s care plan.
PROs will only be effective, though—and widespread—if we make them easier for both patients to capture and the clinical team to use.
Patients need to be able to easily report how they tolerate their treatments and understand the value in doing so. Clinicians need this data to be accessible in real-time, at the point of care. They also need support in understanding the relationships between drug toxicities and a patient’s clinical and genomic data, and what outcomes they can expect based on similar patients. We can leverage technology to better integrate PROs into electronic health records and make this data more accessible to patients and their doctors.
When clinicians have a comprehensive view of a patient—not just of their clinical and genomic profile, but also of how their quality of life will change—they can deliver truly personalized treatments. And when patients fully understand the symptoms they can expect, they can give true, informed consent to their treatment plan. That is the type of precision cancer care we should strive for.
Celine Marquez, M.D., is the Director of Oncology at Syapse.
