WHEN CANCER PATIENTS ARE TREATED with chemotherapy, side effects are common, and it can be difficult to keep track of when symptoms develop or to describe them to care providers. It can also be tricky to decide if or when to make an urgent appointment or head to the emergency room.
It turns out technology can help. A new study found that patients who tracked their symptoms with an app generally had a higher quality of life and were more likely to live longer.
Tips for Tracking Symptoms
Communicating your symptoms to your care provider can help you feel better sooner and may also help you skip a trip to the emergency room. Here are ways you can get the help you need:
- Discuss with your care providers what symptoms they consider worrisome and at what point you should call about new or changing symptoms.
- Keep a paper or electronic diary with your symptoms, their severity and any questions or concerns you might have. Bring this to your appointments.
- Find out if your treatment facility has a triage nurse. Contacting the nurse can help you determine what your next steps should be if your symptoms worsen.
- Ask about dedicated resources for cancer-related urgent care in your area.
- Organize the records of your diagnosis and treatment, including what prescriptions you are taking. If you need to go to the hospital, you will have all your information in one place.
Ethan Basch, a medical oncologist and health researcher at the University of North Carolina Lineberger Cancer Center in Chapel Hill, published the findings in a research letter in the July 11, 2017, Journal of the American Medical Association. The study enrolled 766 patients at Memorial Sloan Kettering Cancer Center in New York City who were being treated with chemotherapy for metastatic breast, lung, genitourinary or gynecologic cancers. The patients were divided into two groups. One group followed the usual practice of reporting symptoms to their doctors at office visits and calling the office if symptoms arose between visits. The other group used the app, which had them rate the severity of 12 symptoms they might experience during treatment, such as nausea, pain and loss of appetite. When patients used the app, nurses received alerts about their symptoms.
The study found that patients who used the app lived about five months longer than those who followed traditional reporting measures. Previous studies found that patients using the app had a better quality of life, could stay on chemotherapy longer and visited the emergency department less frequently than those who reported their symptoms traditionally.
The study found that the app was, in some cases, as beneficial in extending survival as some cancer drugs. Basch says while he was initially surprised that the app could have that effect, “it does make a lot of sense. If you focus on people’s health status and their symptoms, you’re going to improve their cancer outcomes.”
A Prescription for Fewer ER Visits
Treating symptoms earlier can help patients avoid visits to the emergency room
Cancer patients often find themselves in the emergency room (ER) when symptoms like vomiting, diarrhea and pain become severe. Yet, a recent study found that many of these visits might have been avoided if patients had been treated sooner for their symptoms.
Laura Panattoni, a health economist at the Hutchinson Center for Cancer Outcomes Research in Seattle, and her colleagues looked at ER visits for more than 5,800 cancer patients with solid tumors who lived in western Washington state and had been treated with radiation, chemotherapy or both between 2011 and 2015. During that time, 27 percent of the patients went to the ER at least once.
The researchers compared the symptoms the patients reported to a list of potentially preventable chemotherapy-related side effects developed by the Centers for Medicare and Medicaid Services. They found that 53 percent of the ER visits by patients with cancer-related symptoms could have been prevented with earlier treatment. Avoiding the ER would have also reduced costs for treating the symptoms.
Pain was the No. 1 symptom that sent cancer patients to the ER. “There are a lot of ways [doctors] could manage pain outside of the ER that would be better for the patients and also lower costs,” Panattoni says.
Cancer centers can help people going through chemotherapy address their symptoms earlier by providing same-day appointments, extended office hours and telephone triage nurses. Urgent care centers designed specifically for cancer patients can also help. In 2012, Johns Hopkins Sidney Kimmel Cancer Center in Baltimore opened a dedicated urgent care facility that now serves patients from 8 a.m. to 8 p.m. Monday through Friday. In 2014, the center treated about 800 people; in 2016, close to 2,000 were treated.
The nurses and physicians who work in the urgent care center have expertise in treating cancer patients, unlike many ER doctors. This can benefit patients in many ways. For example, cancer patients with a fever who go to the ER may not be seen for several hours; in the cancer urgent care center, providers know the fever may be a symptom of neutropenia (a low white blood cell count) and that patients should immediately be treated with antibiotics, says Sharon Krumm, director of nursing for the cancer center.
“If [cancer patients] have a broken bone or a heart attack or a stroke, we want them to go to the emergency room,” Krumm says. But for symptoms related to cancer and cancer treatments, “the ER is not always the best place for a patient with a cancer diagnosis.”
Some cancer centers are already using apps similar to the one Basch studied. At the University of Michigan Comprehensive Cancer Center in Ann Arbor, skin and breast cancer patients use apps developed by Michael Sabel, a surgical oncologist at the center. One of these apps, Breast Cancer Ally, prompts patients receiving chemotherapy to answer questions about symptoms such as fever, nausea and vomiting. If symptoms are severe, the app directs the user to take appropriate steps, from making an appointment with an oncologist to calling 911.
Sabel says that many patients respond positively to the app initially, but over time, their enthusiasm wanes. “We have to think about how to keep people engaged,” he says. He also notes that the apps are not meant to replace communication with care providers, but to enhance it. “Patients sometimes don’t call because they don’t want to bother us, even though they should,” he says. “If we intervene early, we can really head off a more serious complication down the road.”
Basch is now heading up a clinical trial that will compare the app to routine care in 1,000 patients at a number of different cancer centers nationwide. “Cancer doctors and nurses really care about making people feel better, but we don’t always know what’s happening with our patients,” he says. “For a whole host of reasons, people don’t feel comfortable picking up the phone and letting their doctor or nurse know.”
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