Women refuse follow-up tests for breast cancer

In a study of women with breast cancer, Kaiser Permanente researchers and others examined characteristics of women who refused recommended follow-up testing after a positive breast cancer screening test, or a visit to a medical provider for breast cancer symptoms.

Those refusing were more likely to be 75 or older and have six or more children. The study appears in the Nov. 8, 2005 issue of the Journal of the National Cancer Institute.

"What is surprising is that these women who declined the recommended follow-up procedures were getting regular medical care and had a number of clinical visits prior to cancer diagnosis," says lead researcher Sheila Weinmann, PhD, with Kaiser Permanente's Center for Health Research in Portland, Ore.

"Results of this study showed that refusal was not associated with socioeconomic status or race," says Joyce Gilbert, MPH, formerly a researcher with Kaiser Permanente's Center for Health Research in Hawaii. Gilbert, now with Kaiser Permanente's Care Management Institute, says that, "the nature of refusal is not yet fully understood."

Researchers found the most frequently documented reasons women refused follow-up care included denying there was a problem or having a fatalistic view of their medical prognosis. Others expressed fear of further diagnostic tests and surgery and fear of discomfort from a mammogram. Most refusals occurred at a clinical visit but some also took place during mammography appointments or during follow-up telephone calls. Sixty-one percent of the refusers had breast cancer symptoms noted in their medical chart sometime within the three years before breast cancer diagnosis.

The study looked at medical records of 1,347 women age 50 and older who had been diagnosed with late-stage breast cancer and an equal number of women with early-stage breast cancer. The women, who were diagnosed from 1995 to 1999, were from five Kaiser Permanente sites and two other nonprofit health care systems that are part of the Cancer Research Network, a consortium of research organizations affiliated with nonprofit integrated health care delivery systems and the National Cancer Institute.

Seven percent of the women refused a health provider's advice for a follow-up procedure sometime during the three years before diagnosis. The women refusing breast cancer follow-up services were almost twice as likely as non-refusers to be in the late-stage group.