With more and more data supporting the association between actress Angelina Jolie's double mastectomy and an increase in the amount of patients seeking genetic testing, the attention is on genetic counselors to improve their intake model to more efficiently handle the increased demand.
Joy Larsen Haidle, MS, CGC
With more and more data supporting the association between actress Angelina Jolie’s double mastectomy and an increase in the amount of patients seeking genetic testing, the attention is on genetic counselors to improve their intake model to more efficiently handle the increased demand.
And while genetic counselors have always been looking to improve, the “Angelina Jolie effect” has “shortened the timeframe to put ideas into play,” said genetic counselor and president-elect of National Society of Genetic Counselors (NSGC) Joy Larsen Haidle, MS, CGC. “As soon as [Jolie’s announcement] happened, all the counselors had to make adaptations in order to get the volume of people through that wanted that service.”
Newly released results of a study conducted at Sunnybrook Odette Cancer Centre in Toronto found a sharp spike in the number of referrals received for genetic testing of women, and also in the number of women found to harbor the BRCA mutation in the 6 months after Jolie’s May 2013 announcement about her procedure.1
The authors reported that the number of women referred for genetic counseling increased by 90% after the release of Jolie’s story (487 before vs 916 after), which translated to an increase of 105% in the number of women who qualified for genetic testing (213 before vs 437 after).
“While this is a small study, it shows the profound impact that prominent figures like Jolie can have on public awareness of health issues,” said the study’s lead author, Jacques Raphael, MD, a clinical fellow at Sunnybrook. “After Angelina Jolie’s story was released, physicians were probably more proactive and referred more patients; at the same time, patients were more likely to request and seek genetic counseling.”
The quality of referrals (the proportion of women referred for testing who actually qualified for it) remained the same, “with nearly the same percentage of patients who qualified for genetic testing and who were identified as BRCA1/2 carriers,” the authors wrote.
Rethinking Genetic Testing Referrals
“What I’m pulling from this (study) is that the triage model needs to change,” said Haidle. “Because if they’re saying that the quality of their referrals stayed the same, which is different than what we say in the United States, I think it has to do with the criteria that they have in order to make the referral to begin with and then to be able to cover the test, versus in the United States, where we have a different process to be able to make the referral.”
Haidle explained that here, anyone can self-refer themselves by discussing their genetic concerns with a genetic counselor. In Canada, there seems to be a stricter triage process where only those patients with a strong family history of a cancer go on to get tested, she said.
A survey conducted by the NSGC showed a significant increase in patient calls and requests for testing and referrals from healthcare providers in the year following Jolie’s announcement. Specifically, the survey reported that 90% of responders reported an increase in calls immediately after Jolie’s announcement, and 84% of responders reported either a significant increase, or increase in requests from “low-risk” patients. There was also an increase in “worried-well” callers, or healthy women without a family history that are concerned about their personal breast cancer risk. Thirty-one percent of survey responders reported an increase in this group of patients.
So while Jolie’s announcement played a role in the general population expressing an increase in getting tested, it didn’t increase the public’s understanding of the topic, Haidle said.
“It caused a nice conversation for people to start talking about it and thinking about it amongst their family history to determine, ‘could this possibly be me?’” she said.
Results of a recent survey published in Genetics in Medicine found that while Jolie’s announcement prompted respondents to think about taking action, it didn’t necessarily equate to action being taken, such as talking to a doctor or a genetic counselor.2
This leaves it up to the genetics counselors to rethink the model in an attempt to become more accessible to patients.
“As a genetics counselor, it’s our job to do that risk assessment and look at the different criteria and to be that filter for the worried well,” Haidle said. “In the United States, we might be able to learn from the experience in Canada by having a more formal or standardized triage put into place so that we’re limiting the unnecessary referrals and the unnecessary testing.
Meeting the Demand
When genetic counselors were faced with an increased volume after Jolie’s announcement, they began implementing practices that would improve the workflow while remaining efficient, Haidle said.
Because of the volume of calls, genetic counselors implemented a screening process to talk on the phone before a meeting to determine if the patient would actually benefit from gene testing or not. Genetic counselors also gathered family history over the phone and called to remind patients of their appointments in order to reduce the amount of missed appointments. Also, more genetic counselors were hired, and the documentation process was streamlined in order to reduce the amount of time of standard clinician notes.
And with the increase in genetic technology and testing, it is going to become more important for patients to meet with genetic counselors to discuss their results in depth, Haidle said.
“It becomes more important now for the public to understand that genetics is not necessarily routine black and white testing like other medical tests are,” she said “[Patients] should see someone with expertise to talk through what [results] mean because this test…impacts anyone related by blood as well.