BRCA Counseling Guideline Improves Decision Making

SAN FRANCISCO--Establishing clinical care guidelines for hereditary (BRCA1 or BRCA2) breast cancer is increasingly important for managed care organizations as well as private physicians, Susan Kutner, MD, said at the American Cancer Society Second National Conference on Cancer Genetics.

She said that instituting such guidelines at her HMO--Kaiser Permanente in Northern California--increased staff awareness about the issues facing genetic cancer patients and led to higher quality care. Dr. Kutner is chair of the Northern California Kaiser Breast Cancer Task Force and chief of surgery in San Jose.

The medical professionals who spearheaded the Kaiser project nationally set out to determine how to use BRCA counseling most effectively to reduce breast cancer morbidity and mortality. In so doing, they hoped to gain experience in the collaborative development of outcomes-based guidelines for genetic technologies and thus lay the foundation for other genetic guidelines, "not just those affecting breast cancer," she said.

After development, the BRCA guideline was reviewed by a wide cross-section of the community, including breast cancer advocates, consumer groups, professional organizations, and legislators. The guideline established criteria for both genetic testing and counseling and requires that the testing be ordered by a medical geneticist.

Women May Overestimate or Underestimate Their Risk

"Many patients have an inflated or a deflated idea of their risk. Guidelines are important because they assist the patient and her primary care provider in the decision about whether to test," Dr. Kutner commented.

The guideline was designed specifically to focus on counseling of women and families at high risk and to develop the multidisciplinary support for needed follow-up.

The guideline recommends BRCA counseling for women whose family histories shows early onset, bilateral breast cancer and multiple first-degree relatives with breast cancer. Prenatal testing is not recommended, nor is testing advised for females under age 18.

Educational Materials

"Before testing, educational materials about the test are provided to patients," Dr. Kutner said. Counselors do an in-depth risk assessment and advise patients about other issues such as insurability, confidentiality, and discrimination, as well as provide assistance in developing psychosocial support. Informed consent is then obtained, and follow-up visits are scheduled.

As part of its new guideline, Kaiser is currently establishing a BRCA data registry, to keep tabs on the outcomes of patients who have had genetic counseling and testing.

To promote the guideline, Kaiser offers in-depth educational opportunities, including video conference lectures for physicians, health information tapes for patients, and in-depth seminars for clinical care experts.

Dr. Kutner noted that the cost of instituting the genetic counseling guideline is not yet known, and the stakes of caring for such patients are high.

"We want to make wise investments with our money and technology to best benefit our patients," she said.