Amber Hagen, NP; Eric Surrey, MD; and Tara Hilton navigate various treatment pathways for endometriosis, including medical and surgical interventions.
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Maria Lopes, MD, MS: Is there a difference in how you optimize medical therapy if you’re newly diagnosed vs undergoing initial or repeat surgical procedures? Because for some of these patients, the pain is so severe, they have adhesions, and a treatment of last resort may even be a hysterectomy. What does that path look like? Especially if you’re in the beginning part of the journey vs more toward the tail end.
Amber Hagen, NP: It’s definitely patient by patient. You have to talk to your patients and fully examine and assess what they have going on. You have to do ultrasounds and see what we’re dealing with, what they’ve done already, and what they haven’t tried. Obviously, it’s about quality of life. We want them living their best life, using whichever tool we find appropriate. If they haven’t tried NSAIDs [nonsteroidal anti-inflammatory drugs] or oral contraceptives and their pain is manageable, and we can get them on those for a month or two and get them functioning, then we could delay the more drastic approaches. If their quality of life is suffering and they aren’t getting out of bed, they’re missing work, or they’re missing school, then let’s be a little more aggressive if the patient is capable or if it’s cost effective and they have access to those types of things.
Maria Lopes, MD, MS: Dr Surrey, do you agree? Postsurgery, do you tend to be even more aggressive?
Eric Surrey, MD: I agree completely. We’ve published on this, that there are a host of comorbidities associated with endometriosis. There’s fatigue and things that aren’t specifically related to pelvic pain. We’ve shown that treating patients for their pelvic pain resolves many of these comorbidities. We published on the concept of fatigue [causing things such as] missed days of work. All these things can be improved. It isn’t just the pain; it’s a question of what the patient’s main concern is. If you have a patient who comes in initially who has never been treated, it’s going to be a slightly more conservative approach of how you evaluate it. But if the patient has diagnosed endometriosis and has already had surgery, lots of data out there show that postoperative medical therapy for the woman who doesn’t want to get pregnant right away drastically reduces recurrences.
If you look at this as a payer, what’s more costly: doing multiple surgeries with potential complications or paying for medical therapy after 1 surgery? I can’t answer that from a payer viewpoint, but it seems logical to me. Those are the women who may need to be on longer-term therapies. Once you get beyond oral contraceptives, which you want them to be on for years, and I review what you can be on depending on what you’ve used, such as a hormonal IUD [intrauterine device] for 7 years or longer or the other drugs that are now approved for 2 years of use, you can strategize and make an individual care plan with the patient. But you have to do so by seeing them frequently. You can’t be flexible on that. When someone has pain recurrence after endometriosis surgery, you aren’t going to start from square 1 and say, “Let’s put you on a birth control pill. It didn’t work before, but maybe it will magically work now that you’ve had an operation.” It makes no sense. You have to start at a different place for that person.
Maria Lopes, MD, MS: Tara, do you agree? How are the goals individualized? What are the short-term and long-term goals?
Tara Hilton: Yes, I agree. The primary goal for the endometriosis community as a patient advocate is first to find a doctor who believes us. Amber mentioned that too. The second goal is to have a [good] quality of life, a pain-free life. We want to be able to do the normal things that someone without endometriosis can do. Third, there’s been a little shift because the medical community is so divided within the endometriosis-specific community. Some doctors want the GNRH agonists or antagonists, while some say to stay away from them. Some say ablation surgery, and some say excision. We’re in this confused state of trying to figure out what’s right and what we have access to.
The community is overall shifting to shared decision-making. They want a physician who believes and listens. We don’t want to tell you how to do your job, but we also want you to listen to us if someone wants to avoid opioids or try things like a more holistic approach, more mild medications, or a diet. [Patients want] to have a say, instead of hearing, “Do this or don’t see me,” and then being forced to keep hopping around—I call it doctor hopping—until you find the right doctor. That may still be there, but if you find someone who’s listening to you and what your goals are, not every case is going to be the same. Overall, it’s finding someone who believes you and is there to be all in and help you have as pain-free a life as possible with this disease. [It’s finding] someone who values shared decision-making so you’re listening to each other and you meet in the middle on what’s right for that specific patient.
Maria Lopes, MD, MS: That’s very important. As a payer, many times the way we make formulary decisions has to do with the cost of the treatments as well. [There’s] essentially open access to the NSAIDs and oral contraceptives. An oral contraceptive may be a free of charge under accountable care. But when it comes to the more expensive treatments, the barriers that Dr Surrey, Amber, and patients face is the diagnosis. You’re seeing an ob-gyn [obstetrician-gynecologist] or a reproductive endocrinologist, which gets to Tara’s point about specialist access and then a step approach. “Have you tried the NSAIDs and oral contraceptives?”
There are some limitations to ensure that these are appropriate, [including] reauthorization criteria, wanting to see a response from this treatment, perhaps even BMD [bone mineral density] measurements or consideration for bone mineral density. Some may even have limitations. Dr Surrey talked about how you can be on these agents for a very long time. Certainly with IUDs [intrauterine devices], that’s the case. But given cost, some payers even have limitations on how long you can be on a GNRH agonist or antagonist, and then there’s the cost side in terms of the patient’s out-of-pocket [cost]. Without patent support, this may be a real challenge to stay on a therapy if it’s effective.
Transcript edited for clarity.