The Management of Chronic Gynecologic Conditions During COVID and Beyond - Episode 5

Making Informed Decisions to Treat Endometriosis

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Supported by: AbbVie

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Stacey Missmer, ScD, shares her perspectives on more informed EM treatment decisions.

Ayman Al-Hendy, MD, PhD: Knowing that there are several treatment options available to patients to manage their endometriosis associated pain, how can we start improving the communication with the patient so we can together make the most informed treatment decision?

Stacey Missmer, ScD: This is such an important issue, especially as we’ve already been discussing specifically for patients dealing with endometriosis, urine fibroids, and associated symptoms that they’re particularly around the pain and the uterine bleeding symptoms. There really isn’t a 1-size-fits-all. There are treatments that are absolutely life changing successful for patients, and there are patients with those exact same treatments who have either no benefits or have side effects that further diminish quality of life. There is not a checklist that even with working with the best communication and the clinician-patient relationship can automatically know. Understanding going in that this requires a dialogue and requires an open discussion of those priorities and also selections of treatments for those individuals is really important.

The next thing that’s so critical is that risk is very difficult to convey. I like to use the example of there are things that we know that are definitively causal. For example, we know with absolute certainty that cigarette smoking causes lung cancer, yet only one-third of people who smoke ultimately are diagnosed with lung cancer. That’s a huge number among smokers and compared to nonsmokers it’s an exceptionally high risk. It’s stunning, but two-third of smokers don’t get lung cancer, so even for something so definitive, it is difficult to predict who will experience which risks, and who will experience which benefits? Again this comes back to why it is so important to dialogue with your clinician experts who, from their own experience and their understanding of those biology and the treatment options, will understand basically that algorithm, the choices of what to try first, knowing that there probably is a “what to try next” and “what to try third”; that is the reality of how this treatment goes.

I think the other thing in terms of resources is that this is one of the really important things that all of us here and those of our colleagues who advocate around gynecologic disorders is that there are national and international guidelines for many other conditions, cardiovascular disease, cancer treatment, and there is not that for gynecologic disorders.

Unfortunately there isn’t 1 well-vetted comprehensive website, book, or place to go for extended information. I would say, similar to so many things, most of the clinical teams have excellent websites that give some basic background and information, so trust what your doctor is posting. There also is the NIH Gynecologic Health and Diseases Branch; it has really lovely information. There are the kind of tried and true web pages from Cleveland Clinic, the Mayo Clinic, and those very respected sites who prioritize and are very much in the business of including evidence-based information.

The last thing I would say about this is just that, again, embracing the fact that no 1 treatment is perfect for everyone, and no 1 treatment is terrible for everyone. While patient’s stories are extremely important, definitely take into consideration that what works for 1 person may not be the best fit for you. What didn’t work for you, may actually be very helpful for someone else. I think also around the social media and things that, a general respect for meeting people where they are and respecting their experiences is something that’s very important in this footprint as well.

Ayman Al-Hendy, MD, PhD: I’m going to move to you, Eric. What are the key factors that we should consider and discuss with the patient when planning their treatment approach?

Eric Surrey, MD: I think it’s a great question. Unfortunately, many of our colleagues don’t really think of this quite through. They have a very standard, “I treat pelvic pain by doing A, B, C, and D, and that’s just what I do for everybody.” and as I think we highlighted earlier in this conversation that, first of all, we have to tease out what the main goal of the patient is. I think perhaps the most important thing that Linda mentioned earlier is fertility versus not because the management of the patient who wants to conceive is completely different. They’re totally different, evaluation and different treatment paradigms. That’s critical. The other area is what if there’s a specific problem besides, “I just want my pain to go away,” to drill down. Tell me if you had to rank the most important parts. I think that could be very helpful also.

The other critical piece is prior experience. You know, what have they been treated with before? As you eloquently said, it was reported 10 years before a diagnosis was made, and data showing that some of folks have seen 5 to 10 clinicians before a diagnosis is made. It’s not logical to use something that’s failed previously. Two, it’s going to really frustrate the patient by just offering something that’s been done before. “This doctor hasn’t really paid attention to my history.” So I think that’s a critical second play.

The third is what are the concerns? These patients tend to be very well read, particularly if they had failed treatments before. If they’re concerned about Treatment A, why? This will help you because that may be an unfounded concern, and it may be a very reasonable concern they can address and deal with.

I guess the other piece is realistic expectations, as I mentioned earlier, really do need to be set. If you just take something like a medical therapy for endometriosis, and you look at what type of symptoms will respond more rapidly, we have excellent data showing that something like nonmenstrual pelvic pain, dyspareunia, is going to take a lot longer to effectively treat than dysmenorrhea.

There’s a realistic expectation that needs to be set there, and lastly I think that as a physician, we are not there just to be a menu just to say, “Here’s all your options, don’t think about it.” I feel that we need to individualize our recommendations. The patient’s coming to us for advice, not just for a list.

I really feel that we have to take the patient as an individual: what’s her needs, what are her desires, and give the pros and cons of the options. It’s not unreasonable if at the end we say, “You know I would tell you what I would recommend to you, but I’m very open to a conversation about this subject.” To let the patient just go, that may be not helpful for her. She’s going to want some direction; that’s why she’s in your office, but I think that you have to very much give pros and cons for her as an individual.

Segment edited for clarity.

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