Treatment Barriers Surrounding Endometriosis

This presentation is brought to you by Myovant Sciences.

Maria Lopes, MD, MS: What are some of the other barriers you’re seeing, particularly around the diagnosis or adequate treatment of endometriosis that in your experience pose significant challenges for patients?

Tara Hilton: One of the major challenges that was there many years ago and is still there today is trying to get past the stigma. There have been years of misinformation, such as people saying, “Your mom’s mom had bad periods, so you have bad periods.” Starting with those who are closest to us and our resources, one of the key drivers would be school nurses. They have the first impact on some of the young generation who might have the onset of symptoms. [It’s important to] have them educated and ready to help.

As Amber and Dr Surrey mentioned, sometimes it’s being able to get to a specialist. An example in our community is we have several community members from the Virgin Islands. They tell us that there’s no one there, so they often fly to the United States, to Atlanta, to different doctors to get care. Imagine having to save up for that to be able to get access to whoever is closest to you. That’s a barrier. The stigma, financial barriers, having someone close, and having the information you need to get care sooner are definitely still big challenges in the endometriosis community.

Maria Lopes, MD, MS: Absolutely. Amber, do you agree? Is this what you’re seeing as well?

Amber Hagen, NP: 100%. I’ve had a couple patients in the last 6 months who have travelled 2 or 3 hours to come to our clinic. We specialize in endometriosis. Coming from someone who has had endometriosis in my journey, it’s mind-blowing how much they’ve gone through, and now they’re travelling 3 hours to come see me. As Tara was saying, people are flying from other states or from out of the country to come for treatment. That’s heartbreaking as a provider when we have all these resources and tools available for these patients. I want to give them to everybody, if only it were that easy.

Maria Lopes, MD, MS: It seems to be a very significant opportunity for telehealth consultations for patients who travel far. Obviously, you can’t do a pelvic exam. If we can open up access to appropriate providers; of course, payment is of the essence, but an opportunity to have a consultation [would be beneficial]. If you’re unsure, what would you try next? Even for payers, it doesn’t help to have expensive imaging or procedures. Even on the diagnostic side, to have an early consultation with a treating specialist may make a lot of sense. Dr Surrey, do you agree? Have you had any experience with second opinions done via telehealth?

Eric Surrey, MD: I do these every day. What do you lose? You lose several things. Being in a room with a patient is much different from looking at them on a screen. There are cues you can pick up on that you can’t pick up on quite as well when looking at the screen. Obviously, you can’t examine the patient. But there’s something to be said for setting the groundwork in that initial visit. If that’s done by telehealth, you can at least organize an initial investigative plan so that when she does come into the office, you can say, “We’re going to do an ultrasound. I’m going to follow up with you. We’re going to do whatever tests are appropriate.” We’re ready to go and can move this process along.

I don’t think it’s appropriate to treat a patient who presents with pain without ever seeing them in person. That isn’t good medicine. But it doesn’t mean that the first visit has to be in person. It allows you to be more efficient with your time. You can get the information verbally from telehealth a lot faster. Then you could begin to put an initial plan together to make her time more efficient, as opposed to someone who has a disparity issue, and has to work hard to get to your office before you come up with a plan. Then she has to come back to do a lot more tests. It would be easier to say, “Let’s get this going for your first visit.” There’s a huge future for this. This is something that needs to be partnered with payers as well to make this cost effective for everyone. There’s no downside to it that I can see.

Maria Lopes, MD, MS: Amber, I’m going to put you on the spot a little. Have you seen any best practices involving what Dr Surrey and Tara just discussed?

Amber Hagen, NP: I’m definitely on board with that initial visit for telehealth. That saves a bunch of time. We did a few telehealth visits with the patient who was driving 3 hours because her time and my time are valuable to us. I don’t want her to drive 3 hours only for us to say, “We need to do an ultrasound, but we can’t do it today, so you have to come back next week.” We can get that game plan going ahead of time and then have them come in and do shared decision-making. “This is what you told me last week. Here are my thoughts. What are your goals here?” We put that all together at that 1 in-person visit and then we go from there.

Transcript edited for clarity.