With Telemedicine, Genetic Counselors Are Reaching More Patients — and Their Families

July 7, 2020 by Dana Farengo Clark

By Dana Farengo Clark, M.S., LCGC, and Beth Fand Incollingo

Since the COVID-19 pandemic hit the United States in March, many patients have become acquainted with telemedicine as a way to visit with their oncologists and other health care providers from the safety of their homes. But not everyone may realize that they can also schedule virtual visits with genetic counselors.

People may meet with a genetic counselor to find out if they have an inherited predisposition to cancer and learn what they can do to reduce that risk for themselves and their families. Individuals who have received a diagnosis of cancer may schedule consultations to determine if they have any genetic mutations that make them eligible for treatment with novel drugs.

To learn more about how telemedicine facilitates these visits, Proactive Genes spoke with Dana Farengo Clark, M.S., a genetic counselor with nearly 20 years of experience who works at the University of Pennsylvania’s Basser Center for BRCA.

Proactive Genes: During the COVID-19 pandemic, telemedicine has shifted into the forefront as a means of getting health care. How has it affected genetic counseling?

Clark: There’s always been some telemedicine happening. Traditionally, in genetic counseling, it was for people who didn’t have access to or couldn’t get to a center. People that could come in did, especially those with cancer. They were coming in anyway to see their oncologists, so they always just came in.

As genetic counselors, we see three types of patients. We see those who are already affected with cancer, so they want information potentially to drive their treatment options, because they’ll only be eligible take certain treatments or medications if they have a certain genetic marker. Obviously, those are people you want to see sooner rather than later.

Number two are newly diagnosed patients trying to make decisions about surgery, for example in the breast cancer world. Some women say, “I’d really like a lumpectomy, but if I have one of these gene mutations that might increase my risk to develop a second breast cancer, then I may choose bilateral mastectomy.” These are people we’ve always wanted to see relatively quickly. And then, obviously, their family members are affected, too. And so we see unaffected people who don’t have a diagnosis but are coming in because of family history.

In the new world, we had to decide who was an urgent visit and who was nonurgent and could be triaged. We said: “We’ll still go in and see all the urgent patients who are making treatment decisions and need presurgical appointments.” But unaffected people who didn’t need an immediate diagnosis were considered nonessential visits and, starting March 16, they went on our schedule as telehealth visits.

Then, what quickly happened was that surgeries dried up and a lot of treatment was delayed to keep people out of the hospital. So now, for the last six weeks, we’ve been exclusively telehealth.

Was there any training to guide genetic counselors through this?

We did have guidance from some of the labs that do the testing. These are not in-house tests; all of them get sent out. And the labs did give us some guidance as to how to make that happen so we could do testing remotely. We learned that we can get a kit sent to a patient’s house so they don’t even have to come in for labs, so it’s become a completely off-site process. A lot of the labs also have a mobile phlebotomist they can send if someone needs a blood draw for some reason, but 95% of patients we offered that to said, “No, thank you. I don’t want a stranger in my house.”

Other than that, there was no training for anyone. In terms of counseling style, there was a little bit of a learning curve, and it was all self-taught.

What have you found to be the benefits of telemedicine?

We found that this was dictated by patients not wanting to come in, so the benefit is that we can still see all these patients. People are still getting tested and getting results, so that’s been really nice, and patients are so appreciative and so thankful. We’ve had patients that are quarantined, and I’ve had two who were wintering in Florida and North Carolina and couldn’t get back, so the fact that they could still keep their appointments was really, really nice.

And I think they’re so happy to be able to sit in their living rooms in their pajamas during their appointments!

How do you think telehealth will continue to play a role after the pandemic is over?

I think patients who are already on site are going to want to be seen because, you know, why not?

But I think that a lot of patients in the near future and even the foreseeable future will say, “Hey, you called my cousin a month ago, can’t you just video me?” I think it’s a workable model. There’s no reason to bring people in, especially in an immunocompromised population, until we know more. We can even still see people in a snowstorm. I do see it as a complementary way, not an alternative way, to do this work that makes sense to me.

Those who learn that they are at risk for hereditary cancer can find it challenging to inform their family members, who may also be affected. Can telemedicine play a role in helping patients to share that information?

Our clients sometimes find that it’s a lot of information and they can’t really explain it very well. So, I’ve been sending them fact sheets that they can disseminate to their family members. But they’re not going to mail it to all their kids or their cousins, so what patients have been asking is, “Can you email that telemedicine link to my daughter who lives in Nebraska, so she can be on the call?” I’ve already had a lot of family investment, which is wonderful, and I welcome that. We have husbands and wives sitting together, and parents and kids, so it’s really been a huge help in disseminating the more complex results.

What should people know about virtual genetic counseling sessions if they’re feeling apprehensive about the process?

Don’t be scared. People may think it’s very impersonal, but it’s not. You’re inviting someone into your home: What’s more personal than that?

Just be willing to try. If it doesn’t work, we can always use the old model, but if you’re scared to come in, you don’t have to. I had a patient today who said, “I know I have to go through chemo, but I don’t want to go in unless I have to. So, can I do all my other appointments on different days at my house?” Be your own best advocate. I think it’s a new normal that people are going to use a lot more.

In fact, we’ve been reaching out to the patients who originally said, “No, I want to wait until this is all over.” And we’ve re-offered them a telehealth appointment, and about 50% of them have now said yes. And I think that, overall, patient satisfaction is through the roof. So, if I had to say anything, it’s: Give it a try.