Patients Report Side Effects Online

Tuesday, December 25, 2007

When chemotherapy left her particularly exhausted or sick to her stomach, Suzanne Warshavsky of Bergen, N.J., would log on to her computer to rate these side effects and how they were affecting her life.

Then, the next time the 63-year-old intellectual-property-lawyer-turned-painter saw her oncologist, the doctor was prepared to discuss the side effects with her.

The online reports by Warshavsky and 106 other lung cancer patients signal a shift in how some doctors are beginning to handle the often brutal side effects of chemotherapy.

When patients self-report symptoms such as nausea and shortness of breath online, doctors and nurses can respond more quickly, said Ethan Basch, the oncologist at New York's Memorial Sloan-Kettering Cancer Center who designed the system. The results of his group's study were published last month in the Journal of Clinical Oncology.

Seventy-seven percent of patients who logged on to the study's secure Web site said the system improved discussions with their doctors, while 60 percent said they felt more in control of their care. The semiweekly online survey makes doctor visits more efficient, Basch said. What's more, it catches critical side effects that might otherwise get lost, such as the anxiety and depression Warshavsky was feeling during her treatments.

"I don't think I would have reported that," she said. "[But] being able to report [first] in the privacy of your home . . . makes it very easy to be absolutely candid."

Basch's work echoes a growing theme in health care: that patients are the most discriminating judges of factors that cannot be counted in a blood sample or weighed on a scale. For more than a decade, doctors have relied on patients to monitor pain; now, patient ratings of other subjective events are starting to gain traction, both in routine care and in clinical drug trials.

"The truth of the matter is, the patient knows best," said Basch, who noted that doctors tend to report fewer symptoms, of less severity and later in treatment than do their patients.

The Food and Drug Administration now recommends that "patient-reported outcomes" be used in clinical trials to evaluate new chemotherapy drugs and other treatments.

Meanwhile, Basch is improving his system and exploring whether patients who report their own symptoms are more likely to survive.

Warshavsky finished her treatment in April but still checks in with Basch's Web site twice a week to report any lingering symptoms. "The fact that somebody is looking at these reports and reading them makes me feel like somebody is keeping an eye out for me," she said.

-- Ishani Ganguli

© 2007 The Washington Post Company