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Ignorance Isn't Bliss for Breast Cancer Survivors

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Ignorance Isn't Bliss for Breast Cancer Survivors

From: Duke and the Doctor

Date: Fri Feb 28, 2003 11:51 am

Subject: Ignorance Isn't Bliss for Breast Cancer Survivors



(HealthScoutNews) -- What you don't know can hurt you when it comes to breast cancer.

Women with the disease who felt their doctors did a poor job of helping them understand what was happening to their bodies suffered more lingering problems after treatment than women who felt well- informed, new research says.

The study found that women who felt confused about their disease and ill-informed by doctors had more depression, more anxiety and irritability, more difficulty in their relationships with friends and family, and were less able to take part in leisure activities or work five years after treatment. All these factors together are considered "quality of life."

"Patients who rated their communication as incomplete or incomprehensible had poorer quality of life even five years after their diagnosis," says study author Jacqueline Kerr, a researcher at the Munich Cancer Registry in Germany. "This tells us that doctors have to work on improving their communication skills with patients."

The study appears in the March issue of the Annals of Oncology.

Using a well-accepted questionnaire, researchers assessed the quality of life of 990 breast cancer survivors aged 27 to 91 listed in the Munich Cancer Registry. The women's quality of life was rated beginning at six months after diagnosis and periodically over the next five years.

The questionnaire divided quality of life into five categories: physical functioning; emotional functioning; social functioning; role functioning; and cognitive functioning.

Physical functioning included questions about their ability to bathe, dress, feed themselves, carry heavy bags and walk. Emotional functioning measured feelings of depression, worry, irritability or anxiety.

Social functioning questions asked the women if their relationship with friends and family has changed and whether they were able to take part in social activities they used to enjoy. Role functioning asked women if they've been limited in their ability to work or to take part in family or leisure activities since their cancer diagnosis.

Cognitive functioning asked women if they had trouble concentrating or with their memory.

Based on their answers, the women's overall quality of life score was rated on a scale of 0 to 100.

Nearly half of the women in the study reported the information they received on various aspects of their disease or treatment was incomprehensible or incomplete, Kerr says. More than half of the women also wanted more opportunities to talk with medical staff.

Women with breast cancer who said they felt the most confused and ill- informed scored on average 10 points lower on the emotional, social, and role functioning categories several years after their diagnosis. There was little difference in physical or cognitive functioning at any point during the study.

Kerr says the medical profession needs to heed the message that women's perceptions about the information they are receiving can have a significant impact on their future health.

If doctors don't have the time to make sure every patient feels comfortable with all the information presented, hospitals could provide women with reading materials or videotapes to take home with them. Another option is training other staffers or even volunteers to answer women's questions.

"When you give people information, they get more control over how they feel and what to expect," Kerr says. "Women say, 'If I could understand what was happening to me, or anticipate the symptoms, then I wouldn't be as frightened.'"

A breast cancer diagnosis is a scary time for women, says Ann Brinkman, spokeswoman for Y-ME National Breast Cancer Organization, which operates a 24-hour breast hotline staffed by breast cancer survivors. You're bombarded with new medical terms. You have to make serious decisions about treatment.

That's why women can't rely on doctors or hospitals alone for information, she says. A woman has to seek out support and information for herself.

"Women can prepare a list of questions for the doctor. They can reach out for support for other breast cancer patients and do their own research online or through books or organization," Brinkman says. "All of those things are really important for women to create a positive experience."

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