It is well known that cancer treatment brings significant side effects. For example, chemotherapy may cause hair loss, nausea and even vomiting, and lowered blood counts. Some drugs cause nerve pain or tingling, while others cause rashes. There are different side effects from different cancer treatments, and experiences can be different among patients. That’s why it is important for patients and clinicians to discuss a patient’s specific symptoms often and then use this information to adjust the treatment plan to relieve them. Reporting side effects early to the health care team can get patients the relief they need as soon as possible.
Tracking side effects is not a new development. When a new drug is developed and first tested in a clinical trial, the researchers record the side effects of the new treatment. This information is then used to evaluate the safety of the new treatment and the size of the doses given. In the early days of oncology, clinicians assigned a numerical score or grade to the severity of the symptom. This was done following established protocols or guidelines to ensure that the information was consistent across different study locations. However, as patients became more active and engaged in cancer care, they began to challenge this practice and asserted that it should be patients who scored or graded these side effects. After all, it was the patients who were experiencing the side effects, and it was they who could most accurately judge how side effects were affecting their quality of life. It took many years and a concerted effort to develop questionnaires that made it easy for patients to accurately report and grade their symptoms.
Clinicians and researchers refer to the surveys used to assess symptoms as “patient reported outcomes” or PROs. PROs were shown to be better than clinician grading systems for capturing the actual experience of people with cancer receiving new treatments.
Research has further shown that using PROs can improve care and health outcomes. Consider the case of someone who is receiving chemotherapy and radiation therapy to treat throat cancer. Completing a daily PRO and sending it electronically to the health care team may keep that patient out of the hospital. A nurse on the team may realize that the patient is slowly losing the ability to drink and worry that they may become dehydrated within a few days. That information will prompt a call to the patient and may lead to a scheduled visit for hydration in the clinic, avoiding a potential weekend trip to the emergency room.
The community of cancer clinicians has embraced PROs because they give clinicians a direct measurement of the experience of people with cancer. Efforts are underway to incorporate electronic PROs into medical records and to make them more widely available. A number of recent clinical trials have used mobile apps to facilitate symptom reporting directly from the patient to the health care team. Widespread adoption of electronic PROs is expected to improve the quality of care delivered to many more people with cancer. Not only should fast, reliable symptom reporting allow fast treatment of the symptoms (and prevention of even more serious problems), but it may foster more collaboration and communication between patients and their health care teams. These are central principles of patient-centered care.
We can also expect that regularly tracking symptoms, such as pain, through PROs will help patients and clinicians work together to identify treatment approaches that do not rely on medications. For instance, acupuncture may help relieve nausea and pain, and it is based on an ancient Chinese medicine technique. Biofeedback can lead to muscle relaxation and may provide local relief in a small area of the body. Mindfulness meditation and simple breathing exercises may distract the mind and bring about relaxation. Techniques like these can reduce the intensity of pain or diminish anxiety, making these symptoms more bearable.
We can envision a future where PROs are used to track other symptoms, such as itching, rash, or diarrhea. Having separate survey tools that are designed to collect information about a specific symptom is essential for this to work well. As newer treatments become available, we need to adapt these instruments so that they also capture the side effects that are frequently associated with each new drug. Troubleshooting together, patients, caregivers, researchers, and oncologists can find the proper methods and tools with which to plan and communicate, so the patient is comfortable and has the best possible health. Recognizing symptoms early and having an easy reporting method gives patients more control in their care and improves communication with clinicians, which ultimately leads to better care.