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Health Journal: To manage symptoms, cancer patients get 24/7 access to nurses online
Tuesday, November 28, 2006

Bette Ghidotti had hoped to spend some time on the beach while at her Sarasota, Fla., vacation home, but fatigue from her cancer treatment was keeping her indoors. Though she could have brought up her symptoms with her doctor, her semimonthly appointments are focused on chemotherapy and prescriptions, she says, leaving little time for discussing anything else.

"My doctor, once in a while, will say it's depression, but I don't really feel depressed," says the 73-year-old retired nurse. And support groups, where others find information and solace, are of little interest to her.

But Ms. Ghidotti, who lives most of the year in Columbus, Ohio, has found help from a Houston nurse practitioner who recommended a mouthwash for her mouth soreness -- a common side effect of chemotherapy drugs -- and prompts her to discuss some of the gastrointestinal problems she wouldn't bother her busy oncologist with. She has never met the nurse, but reads and often responds to her message-board entries every day around 6:30 p.m.

Prior to this, her use of the Internet was mostly limited to email. "I've never done anything like this before," she says, but the nurse "gives me a lot of different things to be thinking about, and moral support, too." What's more, she reports, her mouth pain is gone.

Ms. Ghidotti is part of a clinical study at the University of Pittsburgh School of Nursing, funded by the National Institutes of Health, that aims to see whether ovarian-cancer patients benefit from private message boards where they can discuss symptoms and side effects with doctors and nurses.

Ovarian cancer is the eighth-most-common cancer among women. While it is less prevalent than breast or cervical cancer, it is more difficult to detect and therefore tends to be diagnosed at a later stage, when the odds for survival are lower. It is also characterized by a high level of recurrence and multiple symptoms, which makes the disease well-suited to a study that focuses on symptom and pain management.

Medical experts, broadly speaking, are curious about whether the Internet can help fill in those health-care gaps that affect a patient's quality of life just as much as the disease itself. "A lot of times those symptoms, even if they're important, don't bubble up to the surface" in a typical 15-minute clinic appointment, says Heidi Donovan, an assistant professor at the Pittsburgh nursing school and the head of the study. "Health-care providers feel that pressure, and I think so do the patients."

"The focus of most of my conversations surrounds the diagnosis of the cancer, the treatment of the cancer itself," says Michael Method, a South Bend, Ind., gynecological oncologist who advised on the study. "Issues as simple as constipation, which are major problems in these patients, don't get the time they deserve, so the quality of life may not be optimal. That's what's brought us to this point."

Study participants spend nine weeks discussing symptoms, side effects and other questions with one of the nurses in private exchanges. They are also given a letter explaining the study, which they are encouraged to share with their primary physician, says Ms. Donovan.

A control group receives care as usual, then the two groups switch, and the participants complete the study in 18 weeks. The school will continue recruiting until 90 women have participated.

To measure the results, researchers have participants complete evaluations of their quality of life, severity of symptoms and other factors at several points during the study, which will be examined to see whether the additional feedback improved patients' symptoms. The online communications may also show a cost benefit in fewer or more-efficient calls and appointments with doctors, says Ms. Donovan.

In her message-board exchanges, Carol Anne Blessing found herself talking more frankly about her hair loss than she had with her doctor. "It's really a different rapport," says Ms. Blessing, a 58-year-old special-education teacher in Cincinnati. "I'm able to talk with her about some things I feel like my doctor might think were minor and really wouldn't need to waste our time on. Whereas with her, she's really seeking out information about how I'm feeling, how I'm adjusting and how I'm dealing with a lot of the issues."

There have been growing pains as both patients and nurses learn how to work together online. Once, while composing a thoughtful entry, Myra Washburn, another patient in the study, found that her session had timed out, erasing everything she wrote.

The nurses also struggle with how to gather information from patients they can't see or hear, Ms. Donovan says. She encouraged them to make their online communications as chatty as an in-person visit might be, sprinkling in smiley-face emoticons and asking participants if they're having a tough night sleeping when a message arrives at 3 a.m.

Ms. Washburn plans to print out her 22 pages of exchanges to refer back to. "This is a whole new avenue of expression," she says. She teases her nurse when she gets the occasional late-night response. After seeing an entry from Saturday at 10:30 p.m., she says, "I told her she has to get a life."

First published on November 28, 2006 at 12:00 am
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