Asking cancer patients to periodically report their symptoms online may improve their quality of life and possibly even their survival, according to a new study.
Researchers found that patients who used a website to report their symptoms had better quality of life, were less likely to go to the emergency room, stayed on treatment longer and survived longer than people who were just monitored by their doctors. "We asked people about the most common and impactful symptoms that we would see across advanced cancers," said lead author Dr. Ethan Basch. "This would be pain, vomiting, nausea, diarrhea, constipation, energy loss, weight loss and sleep disturbances. Things that are highly common, subjective and frequently missed."
The symptoms are also actionable, which means doctors and healthcare providers can likely offer treatments or adjustments for improvement, said Basch, of the Lineberger Comprehensive Cancer Center at the University of North Carolina in Chapel Hill. He and his colleagues write in the Journal of Clinical Oncology that these so-called patient-reported outcome (PRO) standardized questionnaires had been suggested as a way to improve symptom control, but researchers didn't know whether the benefits outweighed the cost and burden of using them.
For the new study, the researchers asked 539 patients with advanced cancers at Memorial Sloan Kettering Cancer Center in New York to report 12 symptoms using tablets that were provided to them or at a computer kiosk. Doctors received printouts of the symptom surveys when the patients came in for their next visit, and nurses received emails if the patients reported severe or worsening symptoms.
"We know from this study that nurses took action 75 percent of the time when they got one of these email alerts," Basch said. Another 227 patients with advanced cancers received usual care, which included normal symptom monitoring by their doctors.
The participants entered the study between September 2007 and January 2011. They spent an average of about four months participating in the study and had an average of 16 doctor visits in that time. Over the study period, people who answered the online surveys were more likely to see improvements in their quality of life than those in the usual care group. Patients who answered the surveys were also less likely to report worsening quality of life.
About a third of patients who answered the survey ended up in the emergency department, compared to about 41 percent of the usual care group. Patients using the symptom reporting tool also stayed on their chemotherapy longer than those who didn't use it. About 75 percent of patients who answered the surveys were alive after one year, compared to 69 percent of those in the usual care group.
"I think we take away a couple of things from this study," said Basch. Cancer care providers can improve the quality of their care by having a better understanding of their patients, he said. And even without these types of computer systems, patients can likely benefit from closely following their own symptoms and reporting them to their doctors.
"I think this study is really helpful in showing patient-reported outcomes can be used to identify and address patient issues by both improving the patient-centeredness of care and the precision of care," said Claire Snyder, of the Johns Hopkins School of Medicine and the Bloomberg School of Public Health in Baltimore.
The results also validate the value of having a standard practice in place for collecting this information and tracking it over time, said Snyder, who is president of the International Society for Quality of Life Research and co-authored an editorial accompanying the new study. "We're beginning to really learn the best ways to implement routine (patient-reported outcome) assessment," she said.
