A study that had patients report problems like nausea and fatigue in an online tool surprisingly improved survival by almost half a year, longer than many new cancer drugs.

Why do you think this is true and is actually happening?

When you express concern about problems and someone on the other side is actually taking notice, your survival increases by 6 months, better than the 2-3 months that cancer drugs can do.

When in social situation, be it an online support tools or being cared for by another human being, we increase our immune system and can address our health concerns in positive way that is helping us control the progression of the cancer.

Chicago — If you’re being treated for cancer, speak up about any side effects. A study that had patients use home computers to report symptoms like nausea and fatigue surprisingly improved survival — by almost a half year, longer than many new cancer drugs do.

The online tool was intended as a quick and easy way for people to regularly report complications rather than trying to call their doctors or waiting until the next appointment. Researchers had hoped to improve quality of life but got a bonus in longer survival.

“I was floored by the results,” said the study leader, Dr. Ethan Basch. “We are proactively catching things early” with online reporting.

Patients were able to stick with treatment longer because their side effects were quickly addressed, he said.

People shouldn’t assume that symptoms are an unavoidable part of cancer care, said Dr. Richard Schilsky, chief medical officer of the American Society of Clinical Oncology.

“You want to be able to reach your provider as early and easily as possible,” because a sign like shortness of breath may mean treatment isn’t working and needs to be changed, he said.

The study was featured at the cancer group’s annual meeting in Chicago on Sunday and published in the Journal of the American Medical Association.

Earlier studies suggest that doctors miss about half of patients’ symptoms.

“Much of this happens between visits when patients are out of sight and out of mind,” said Basch, a researcher at the University of North Carolina-Chapel Hill and Memorial Sloan Kettering Cancer Center in New York.

Sometimes patients just put up with a problem until their next exam.

“The spouse will say, ‘My husband was laid up in bed, exhausted or in pain,’ and I’ll say ‘Why didn’t you call me?’ ” Basch said.

The study tested whether the online tool could catch problems sooner. It involved 766 people being treated for various types of advanced cancers at Sloan Kettering. Some were given usual care and the rest, the online symptom tool.

Patients were as old as 91, and 22 percent has less than a high school education, but using a computer proved easy. “The older patients really grabbed onto it very quickly,” Basch said.

The online group was asked to report symptoms at least once a week — sooner if they had a problem — and given a list of common ones such as appetite loss, constipation, cough, diarrhea, shortness of breath, fatigue, hot flashes, nausea or pain.

Doctors saw these reports at office visits, and nurses got email alerts when patients reported severe or worsening problems.

“Almost 80 percent of the time, the nurses responded immediately,” calling in medicines for nausea, pain or other problems, Basch said.

A new analysis showed that overall survival was improved for people who monitored their symptoms using an online tool.

People receiving chemotherapy for metastatic solid tumors survived longer when they used a web-based tool to document their symptoms, according to results from a large, randomized study conducted at Memorial Sloan Kettering. The findings were presented by Ethan Basch at the annual meeting of the American Society of Clinical Oncology in Chicago and were simultaneously published in the Journal of the American Medical Association.

Among the 766 individuals analyzed in the trial, median overall survival was five months longer for those who had the self-reporting tool integrated into their care.

“National studies have shown that doctors and nurses miss many of the symptoms that people experience,” says Dr. Basch, who led this work at MSK and is now Director of Cancer Outcomes Research at the University of North Carolina at Chapel Hill. “We designed this tool and conducted this study to improve upon that.”

An Initial, and More Modest, Goal

“Symptom management is a cornerstone of high-quality cancer care,” Dr. Basch says. Unfortunately, though, it is an imperfect science. “There is a substantial discrepancy between what people experience and what we pick up and act on.”

The traditional method to collect information about a person’s well-being is for a doctor or nurse to talk with the patient during a clinic visit. But a new health issue that occurs between appointments and goes unreported or isn’t acted upon early enough can easily disrupt a person’s cancer treatment plan.

Symptom management is a cornerstone of high-quality cancer care.
Ethan Basch
Ethan BaschMedical oncologist

So Dr. Basch and his team set out to create a more efficient way to gather symptom data and, ultimately, to improve health-related quality of life.

Study participants were asked to use an online interface called Symptom Tracking and Reporting (STAR). They answered questions about 12 side effects from chemotherapy: appetite loss, constipation, cough, diarrhea, difficulty breathing, difficulty urinating, fatigue, hot flashes, nausea, neuropathy, pain, and vomiting. Individuals graded each of their conditions on a scale of zero (not present) to four (disabling). The STAR system also sent two email alerts: Participants received a weekly reminder to complete an assessment, and nurses received a notification when any symptom grade reached three or increased by two points or more from the previous report.

A previous analysis of the same study, published in the Journal of Clinical Oncology in early 2016, showed that the protocol was effective. Health-related quality of life improved more in people who used the tool compared with those who received standard care. Those in the online-reporting group also remained on their treatment longer and were less frequently hospitalized or admitted to the emergency room.

“The benefit to quality of life was substantial compared with the usual care,” Dr. Basch says. “We were catching symptoms early, and people weren’t getting really sick to the point that they could not tolerate treatment.”

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Floored by the Findings

Dr. Basch and his team then embarked on a full analysis of survival, which was a secondary endpoint in the 2016 trial.

“When I started this study, I was interested in improving how we collect data on symptoms and how we could enhance communication,” Dr. Basch says. “Evaluating overall survival was not the direction I was going in.”

Patient-Reported Outcomes
Memorial Sloan Kettering’s Patient-Reported Outcomes and Surgical Experience program seeks to enhance the quality of surgical care by taking a more patient-centric approach.

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Part of the initial plan or not, the overall survival data “floored” him, Dr. Basch says. The analysis showed that those who used the web-based tool survived a median of 31.2 months, compared with 26.0 months for those who received the usual care. In other words, people who self-reported their symptoms lived significantly longer than those who did not.

Even further, nurses responded to email alerts 77% of the time. They helped manage health problems through counseling, providing referrals and supportive medications, and modifying chemotherapy doses.

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Looking Ahead

One of the next crucial steps is to use the tool to assess quality of care, Dr. Basch says.

“For example, as oncologists and nurses, a goal of ours is to control nausea after chemotherapy. This tool helps quantify that symptom’s presence and severity,” Dr. Basch says. “Hard data can help us answer some important questions: How good of a job are we really doing at managing symptoms? Where is there room for improvement?”

The second vital aspect of this research concerns implementation. Dr. Basch notes that is a complicated task, as it requires technology, engaging with and monitoring patients, and changing the workload of nurses.

Today, there are two large national studies integrating this self-reporting side-effect-monitoring tool into community oncology practices. Dr. Basch and his team are interviewing practice leaders and nurses to work out the kinks.

“Like many things in healthcare, it’s one thing to show that something has benefit; it’s another thing to actually roll it out into practice,” he says.

Six months later, health-related quality of life had improved for more of those in the online group and they made fewer trips to an emergency room. They also were able to stay on chemotherapy longer — eight months versus six, on average.

Median survival in the online group was 31 months versus 26 months for the others.

A larger study will now test the online reporting system nationwide.

A colon cancer patient, 53-year-old James Sylvester of New York, is using a version of the one tested in the study to report any problems to his doctors at Sloan Kettering. He hasn’t had many side effects, but a rash led to referral to a dermatologist to see if it was related to his cancer medicine.

“The main benefit is they go holistically all over your body” with the list, asking about things that folks may not realize could be due to cancer, such as a rash or trouble with balance, he said.

“Some of the things you might not tell your doctor, or you might forget,” Sylvester said. The tool ensures the doctor has that information ahead of time, “so when you have that face time, it’s more focused.”