|Trends & Perspectives|
Significant questions have been raised among doctors and public health agencies about whether genetic tests are being offered to the women who can most benefit and whether the information from the tests is being put to best use. Insurance company Aetna Inc. (Hartford, CT) is funding a landmark study that will explore patterns of how and for what groups of women the available genetic tests for BRCA1 and BRCA2 mutations are being used in the community healthcare setting. This study will also look at whether significant disparities exist in the use of these tests among women of different socioeconomic, racial, and ethnic groups. In addition, the study will examine the use of risk-reduction and screening services by patients following testing.
“One of our core concerns is making sure that our members get high-quality and medically effective care,” said Joanne Armstrong, MD, Aetna’s senior medical director and head of women’s health. “We have been watching the BRCA test for a number of years and have recognized that it is moving into the primary care specialty area.”
Armstrong stated that Aetna has had some concerns given the complexity of the BRCA test, the complexity of interpreting the results, understanding how the results tie into medical decision making, and how that decision making has the potential to improve health outcomes. Given all of the complexities in those steps, Aetna wanted to make sure it is optimizing the test wherever there is an opportunity to do so.
“We also recognize that as the BRCA test moves and rolls into a primary care setting, these complexities are getting amplified,” said Armstrong. “So we want to understand what are the quality issues that our members are concerned about and what we can do to help improve that.”
Through this study, Aetna is primarily looking to understand how care around the decisions and results from BRCA testing takes place. According to Armstrong, the study is essentially a survey of patients examining various quality-of-care issues.
“We will be asking patients questions about what their experiences have been vis-à-vis the physician,” said Armstrong. “For example, are they being offered genetic counseling? Are they given some sense of formal risk assessment? Are they educated fully about what the test can do and how the test results tie to clinical decision making? How are they being educated about the availability of the test? What are their needs? What is their knowledge about the test? How are they making decisions? Who is helping them make those decisions with respect to whether they should be tested? And most importantly, what do they do with the test results?”
The study will be the first of its kind to provide data on the use and outcomes of BRCA testing among a large, representative population of individuals in the United States. The study will examine de-identified data on approximately 13,000 Aetna members who receive BRCA testing.
“As a national health insurance plan that operates throughout the United States, Aetna and its members represent a pretty broad look at BRCA testing,” said Armstrong. “Patients come in for testing through specialists’ recommendations, oncologists, medical geneticists, as well as a primary care physician. So we believe that this is a study that looks at essentially the delivery of genetics services in both community and academic settings across the country.”
The study will be conducted by researchers from the University of South Florida (Tampa) and Georgetown University (Washington, DC), in collaboration with the American Cancer Society (Atlanta).
“The researchers at Georgetown and the University of South Florida will be looking at patients for whom BRCA was requested or recommended by their physicians over the course of one year,” said Armstrong. “The American Cancer Society is collaborating in terms of helping with patient engagement and the survey by infusing the perspectives of cancer patients and their families into this survey.”
Armstrong added that some early evidence has emerged indicating that there are differences in the way genetic test services are delivered to and accessed by minority populations. Consequently, that is another question that Aetna is interested in, whether minority patients are having the same amount and quality of genetic counseling services and the same types of conversations, to make sure that they truly understand what the results are.
“So the findings from the study will help us figure out which populations perhaps need genetic counseling before the testing decision takes place so that they really understand what their own risk is, their family’s risk, and who are the optimal people in the family who should be tested,” said Armstrong. “Whether there are differences by race, socioeconomic status, etc., that information will help us drill down on where we should deploy some of the genetic counseling, telephonic counseling, and other tools that we have to make sure that patients can really get the best care and the best use of these genetic services.”
Once the study is completed, Aetna and its research partners are planning to submit a paper on the results of the study to a journal for publication and disseminate the findings from the study.