Improving Disease State Awareness in Endometriosis

Dr Lopes requests panelists to share opportunities for improving disease state awareness for endometriosis.

This presentation is brought to you by Myovant Sciences.

Maria Lopes, MD, MS: I’d like to collect everyone’s thoughts. It always starts with disease state awareness, patient awareness, and provider awareness. How can we improve? The first step is awareness. How can we improve awareness in endometriosis? Whether you’re symptomatic or have a strong family history or some of the risk factors that Dr Surrey talked about earlier, how do we improve the disease state awareness? Because from there, there’s potentially a plan. And now there are multiple treatment options once you make the diagnosis. I’d like to go around the room, starting with Dr Surrey and then moving to Tara and Amber. What can we do to improve disease state awareness? What would a best practice look like?

Eric Surrey, MD: As you said, there are 2 sides to the coin. There’s the clinician side and the potential patient side. On the clinician side, 2 things could be done. Our national societies have an obligation as a critical part of a gynecologic care to provide simple, easy summaries that stay updated. It shouldn’t take 8 years to change guidelines. It’s like walking through a swamp to change these things. This needs to be promulgated to the doctors and other clinicians. On the other hand, you have to be willing to receive it. One would hope that this would be a critical aspect as part of continuing medical education. Certainly, in the OB-GYN [obstetrics-gynecology] and MD [medical doctor] world, we have to have continuing education to keep our boards updated. This should be a critical part. But that’s a simple piece. When new things come along, it shouldn’t take 7 years to talk about it.

The second piece is in the provider’s office. Almost every person who does OB has handouts on ruptured membranes. What’s the standard therapy? What are we going to do in pregnancy and hyperemesis? Why not create that for other gynecologic conditions, such as pelvic pain? It requires 1 episode of work to create this handout. Then you just give it out to your patients. Managing pelvic pain—you work on it for a weekend, and there you go. That can be incorporated in guidelines.

On the patient end, the patient doesn’t have a society. They have advocates. Tara is a wonderful advocate. There are the national organizations. But if you don’t know you have endometriosis, you can’t tell the Endometriosis Association. There’s a lot of online work. There’s a fascinating paper that just got published in the American Journal of Obstetrics & Gynecology in April that said that patients who present with pelvic pain are infinitely more likely to be involved with social media than those with other gynecologic conditions. I’m confident that Tara is more than well aware of that. This is a way to get readily available information. If you google “pelvic pain,” something should come up to help you that isn’t sponsored by somebody’s surgical institute but is a balanced approach to this. It’s a 2-pronged thing.

The last point I’ll make is to liberate patients to be able to talk. Don’t just say, “Let’s do your annual. Let’s ask a couple of quick questions.” Let them open up and feel that they can talk about their menses and pain. We need to let them know that what they think is normal may not be.

Transcript edited for clarity.

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