This very small study found that when people were told about breast cancer gene test results over the phone, they often had more worries and stress than when the results were told to them in person. The results were presented at the 2008 San Antonio Breast Cancer Symposium.
Before they had the test, most people said they wanted to get breast cancer gene testing results by phone. A phone call was said to be more convenient than scheduling and getting to an office meeting to review the results. But only 25% of people who already had learned they had an abnormal breast cancer gene said they'd prefer to get their test results by phone.
Any kind of abnormal test results need to be given with detailed information and emotional support so the person can ask questions, make sense of the results, and handle the worry and stress that may go along with getting abnormal results. While a phone call may be more convenient, your healthcare professional may not be able to accurately gauge and respond to your reaction to an abnormal result over the phone.
If you're going to have a medical test and the results could affect your future healthcare, talk to your medical team before the test about how you want to get your results. You may prefer a phone call and your healthcare team can help you sort through what's best for you if the results are abnormal. Based on the results presented here, a face-to-face meeting to review the test results and what they mean for you and your health may be a better option.
The Breastcancer.org Communication With Healthcare Providers page has tips for making your relationship with the doctors and other medical professionals on whom you depend the best it can be.
SAN ANTONIO, Dec. 12 (MedPage Today) -- Many women tested for genetic breast cancer risk may be willing to get the results over the phone, but the experience may not be as palatable as expected, researchers found.
In a pilot survey of patients tested for the BRCA1/2 mutation, 75% of patients awaiting results, and 45% overall, said they'd be interested in getting their results by phone rather than coming in to the office, Linda J. Patrick-Miller, Ph.D., of the Cancer Institute of New Jersey in New Brunswick, and colleagues reported at the San Antonio Breast Cancer Symposium.
But among those who'd already learned that they'd tested positive for risk, only 25% said they would have wanted to find that out over the telephone.
Many genetic counselors ask the patient's preference for disclosure when blood is drawn for the test, two to four weeks before results are known.
But these findings suggest clinicians shouldn't rely on what patients think they want beforehand, Dr. Patrick-Miller said. "At the risk of being paternalistic, patients can't possibly know how they're going to feel about getting their BRCA1/2 results."
Yet, she said, phone disclosure is increasingly an issue for genetic counselors.
In another survey reported here by the same research group, 98% of genetic counselors reported having provided results by telephone, although about half did so less than a quarter of the time.
Notably, 33% reported having bad experiences with telephone disclosure that led them to question it as a practice.
At some centers, though, the sheer volume of testing has made routine phone disclosure necessary, Dr. Patrick-Miller noted.
Also, direct-to-consumer marketing for the BRCA1/2 test by Myriad, the company that holds the patent and does all such testing in the U.S., has led to more patients getting their results by mail or phone.
"These women come to us [genetic counselors] later and they're a wreck because they don't know what to do with the information," Dr. Patrick-Miller said.
Because of these factors, she and colleagues did a pilot study of opinions among 27 women and three men who had BRCA1/2 testing in the cancer risk assessment and counseling programs at the Fox Chase Cancer Center in Philadelphia and the Cancer Institute of New Jersey.
Among the participants, 26 had received their test results within the preceding nine months and four were awaiting their results.
Nearly all of those who'd already received their results reported being satisfied with in-person disclosure (90%). Interest in receiving results by phone was as follows:
The main reason cited for interest in receiving results by phone was convenience, whereas the main perceived disadvantage was lack of visual or personal connection with the genetic counselor.
Only three patients thought it would be more stressful or that they would be less likely to ask questions if they received the results over the phone.
One of the important remaining questions for clinicians is whether telephone disclosure lessens the impact of the results, Dr. Patrick-Miller said.
Her group is using the survey results to design a trial in which patients are randomized to receive their BRCA1/2 test results by phone or in the clinic and followed for one year to see whether patients ultimately follow the medical management recommendations given at post-disclosure counseling.
Dr. Patrick-Miller reported no conflicts of interest.
Primary source: San Antonio Breast Cancer Symposium Source reference: Patrick-Miller L, et al "Telephone disclosure of BRCA1/2 test results? Opinions of recipients of BRCA1/2 testing" SABCS 2008; Abstract 2098.Additional source: San Antonio Breast Cancer SymposiumSource reference: Bradbury AR, et al "Telephone disclosure of BRCA1/2 test results: a survey of genetic counselors" SABCS 2008; Abstract 1098.
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