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
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.
"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.