CANCER: ‘Why didn’t you call me?’

lished 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 Ketter- ing. 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.

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-yearold 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.