Corey Siegel, MD, on Shared Decision-Making in Ulcerative Colitis

Dr Siegel reviews the importance of shared decision-making, careful listening, and providing guidance in developing treatment plans for patients with ulcerative colitis.

Corey Siegel, MD, is the section chief of Gastroenterology and Hepatology and the director of the Center for Digestive Health at the Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire.

Transcript:

Hi, I’m Corey Siegel. I'm the director of the Center for Digestive Health at the Dartmouth Hitchcock Medical Center, and I'm pleased to be talking with you today about shared decision making for patients with ulcerative colitis. Shared decision making is always interesting, but it's particularly interesting in patients with ulcerative colitis, the main reason being we have excellent medications now available to treat UC. However, surgery is always an option sitting in the background, and although people don't typically choose surgery as an early or even late treatment for UC, the fact that it's always there and balanced against what people fear are potential side effects of medications, makes really every conversation, I think, interesting and a shared decision-making opportunity.

When you're thinking about ulcerative colitis in a few different ways, let's just first set the stage as far as definition shared. Decision making is defined as the process of interaction with patients who wish to be involved with their health care providers in making medical decisions. And that's the key part of this. It's patients who want to be involved, and there are different types of patients that we meet in the clinic. They're patients who in fact want to be part of that decision, the real collaborative role. They want to hear information from their provider and then make decisions with their provider about next steps, but also there are patients who have a passive role who say, “Hey, you're the specialist, you tell me what you think is right and I'll follow your lead.”

And then there's the other side of it too, which is the very active role, which is, I've done my research, I've done my reading, this is the medication I want to choose, and the order of medications I'd like to try. So the first thing the experts in shared decision making sometimes talk about first making a diagnosis of what type of shared decision maker your patient is and sometimes patient and family—and then you can have a much more engaging conversation about how much information do you want and how much would you like to be part of the decision.

Keep in mind though, even those with the passive role who want to be told what they should do by the expert, they really need to understand the stakes, meaning what is at stake in this decision. If it's simply choosing one antibiotic over another for treatment of pneumonia, that's not really a great shared decision-making opportunity and the stakes aren't very high. But if you're having a conversation with the patient about using a drug that has side effects, some of which are listed as malignancy or serious life-threatening infections, or you're alternatively talking about a surgery that really will alter their anatomy for the rest of their lives, they need to hear that and they're allowed to opt out and let you guide them. But they at least need to know the stakes and understand, how is this decision important to me?

Now, when you ask patients in general, do they want to be part of shared medical decisions, it's pretty split. Most people want some involvement, but it's not everyone. It's barely about 50%. And then these other options of just the doctor deciding is about a quarter or so, about 25%, and then the patients wanting to make the decision is about, again, another 20 to 25%. So again, it is variable and you shouldn't assume how your patient might want to be involved in those decisions, but you should understand how they want to be involved in those decisions.

So one of the reasons to think about making shared decisions with your patients is not just to be a great provider and make sure they feel comfortable, but it's really about this concept of decisional conflict. Decisional conflict is the feeling that patients just are uncomfortable with decision that they're making. It's really a question of do they want to do it? And the reason that it's so important is because people with high decisional conflict have a much higher likelihood of changing their mind about therapy. Once they leave the office, there's a much higher rate of delaying a decision or maybe even making no decision. There's a higher chance that they have regret about that decision. And interestingly, there's about a 20% higher chance that they'll blame their provider for a bad outcome. So again, not the reason to effectively educate and share management with your patients, but to keep in mind that the consequences are more than just you want your patients to be happy in the office, is that you want them to be comfortable with their decisions so they ultimately understand the treatment that you have together come to a decision about. So this concept of decisional conflict, again, should be in the back of your mind a little bit.

Now, this is all based on the premise that we're able to clearly communicate the choices to our patients. And I think we can all recognize that communicating with our patients could be very hard. The data that we have in the literature come from clinical trials. They come from systematic reviews and meta-analysis. Honestly, the way the data are presented with statistical outcomes, whether it be P values or odd ratios, can be really hard to communicate clearly to patients. And again, we need to think through if we're going to give them data to make decisions on that. If we're throwing out P values of 0.05 and numbers needed to treat and relative risks, that's not really going to get us there. And we need to think carefully about how we talk to them. There are a few concepts around shared decision making and communication that we should know.

One is around this idea of numeracy, is that patients typically have a pretty bad understanding of fractions and small numbers. For instance, some work that was done by my colleagues here at Dartmouth showed that half of patients weren't able to convert 1% to 10 in 1000; 80% of patients were unable to convert 1 in a 1000 to 0.1%. And you might be sitting there thinking, well, gosh, those are confusing, or maybe it's not that hard. But they actually did this with medical students too, and medical students at an unnamed university did just as poorly. So the fact is it's not patients are bad at numeracy, it’s that kind of people aren't great when you start throwing statistics out, particularly small numbers and percentages, which is often how we deal with when we talk about risk of side effects of these medications. So we have to think about the right way to communicate with it.

And experts in the field of patient communication talk a lot about using absolute risk as opposed to relative risk. Absolute risk being something like 1% of patients can have a certain outcome, 1 out of 100, that's absolute risk, as opposed to saying it's 10 times more likely a patient will have an outcome, which is really hard because you don't know what the baseline rate is to start with. So in general, when you have a chance to think about how you're going to communicate data, whether it's effectiveness data or risk data, whether it's medications or surgery, typically using absolute risk is the right way to go. And I've talked to many of my patients about this and as part of research projects done qualitative focus groups. But one thing that always strikes me when I remember this quote from a patient of mine who said, “I'm with you for about 20 or 30 minutes every few months to talk about the benefits and risks of therapy and different treatment options, but 99.99% of the time I'm out there in the world watching commercials, hearing advice from others, talking to nonmedical people, medical people, throwing advice their way.”

So when we're thinking about shared decision-making, you could hope that your patients are relying on the data that you might talk with them about in the office. But again, please remember how much information is out there and what they might be coming in with as far as fears and worries about medications that they're using or surgery. My tactic on this is ask your patients if they have specific concerns and address those specific concerns as opposed to giving a laundry list of all the things that you might think they're worried about. Because I'm surprised many times that patients are more worried about things that really shouldn't be a concern and sometimes less worried about things that are real potential side effects and they should know about. So the answer is almost always ask your patient, listen to your patient, talk to your patient, and communicate as clearly as possible.

Some tips about clear communication and then we'll get back to ulcerative colitis specifically, is again, try to use absolute risk as opposed to relative risk. Do your best to avoid decimals— 0.06% is very hard to conceptualize. What that really means and try to keep your denominators consistent. Talk about 1 out of 1000 or 1 out of 10,000. When you start mixing up that denominator and comparing things, it gets very hard to compare apples to apples and a bit confusing for the patients. So again, think through what decision making is where you think your patient is on the spectrum of how engaged they want to be in the decision. And just make sure that to the best of your ability, at least you're able to give data and information in a way that they're going to understand. So now let's turn this back to ulcerative colitis and think through why is this so interesting or potentially complicated and in UC?

Well, let's take it from the beginning. The first drug that you're using to treat their UC when they're brand new to this diagnosis and don't know much, they're often introduced to 5-ASAs and potentially corticosteroids such as prednisone. And we all know that prednisone works very quickly, but has bad side effects. So that might be people's first exposure to treatment of UC is having side effects from prednisone, but recognizing that medications can work. Now, there are many patients who at diagnosis are already too far advanced and might have moderate to severely active disease where you're wondering if you can get away with 5-ASA therapy and a course of prednisone or to move right to advanced therapies, specifically biologics and small molecules. And it of course depends on the patient and how they're doing, but that's really the first decision is where are you jumping into the pool? Are you jumping right into advanced therapy or do you have the luxury of a little time to try 5-ASAs, get them better and see if you can maintain them on there?

My tactic when I meet patients first in the office is I really tell them about the spectrum of treatment, starting with 5-ASAs, corticosteroids, and then advanced therapy. And I almost always bring up surgery even when it seems like a ridiculous time to bring up surgery, like right at diagnosis. I think it's important for them to hear that because that's the balancing against all the other medications and again, potential side effects that they're weighing against the benefit of treatment and potentially the benefit of surgery. So the next question after what medication are you starting with is inevitably we're moving on to either a second or third line. Therapy is really the positioning of these drugs, and the fact is we have lots of options now, which is fantastic for ulcerative colitis, and I don't think you need to go through every treatment option with patients to make a shared decision of which biologic.

But I would outline the basic classes that we have for choices of both biologic therapy and small molecule therapy. And again, that's a perfect time to engage your patient, whether it's a new diagnosis or a second- or third-line therapy of what else is out there, what's kind of on our list in our medicine cabinet that we can grab from to help our patients and guide them through that decision.

 Another part that again is complex with ulcerative colitis is surveillance. And when we're thinking about doing surveillance, colonoscopy ranging typically anywhere from 1 to 3 years, in some cases a little longer, I find that many patients and many providers don't have conversations about why are we doing this in the first place? It's not just of course to look for polyps or to look for cancer. It's looking for what may be very hard to see or invisible, low-grade or high-grade dysplasia.

And what becomes complicated is when you find this dysplasia, whether it's low-grade or high-grade, and you're starting to have conversations about either performing more intensive monitoring or potentially having a colectomy at that point, if they haven't understood why they're doing this in the first place, it really comes as surprise in your mind as a provider, you know why you're doing this and you know the conversations you're going to have if you find high-grade dysplasia. But again, this is new to most patients and worth the discussion of why you're doing surveillance in the first part. As patients get older, you'll find that they often say, am I done with doing colonoscopies? And again, they have to understand the reason of, Hey, this is what we're looking for. And at some point, the risks do start outweighing the benefits of doing frequent surveillance, and you start to think to yourself, would this particular patient ever consider a colectomy if we even found dysplasia?

Those are conversations to have in the office and to think about before you're consenting your patient at the bedside or waking them up after a procedure, telling them that there's some concerning news that you need to discuss with them that potentially could lead to surgery. Then another, and probably one of the most complex decisions that we get into with patients, is the idea of surgery, of when, if and when to have surgery and if they need a surgery either for refractory disease or dysplasia or cancer that we talked about, what type of surgery, whether it's an ileostomy and living with an ileostomy or having a temporary ileostomy with a plan for J-pouch surgery. So these are very, very important conversations, and again, we absolutely need to engage our patients as part of this decision. You may have your preferences with all this, whether it's what medication you're starting, what medication you're moving to as far as positioning, how often to do dysplasia surveillance, when to do surgery.

And shared decision making is not to give your patients the options and have them decide. It's give them the information and the education and then together decide. And you absolutely should give your opinion. You are the specialist in many cases in talking with the patient. While you're an expert perhaps in managing the disease, your patient is an expert in living with the disease. So we need to engage with them, understand what their perspective is and what their preferences are. But absolutely, you should give what you believe is the right next step as the treating provider and work with them to come to an individual decision for what's right for them. When we talk with patients about what they're really worried about, my perception for many years was they're most worried about the medications and side effects, but really in surveys that we've done, what it is, is patients first off don't want to have a colectomy, and that's one thing that worries them the most, and they don't want to get cancer.

So what's interesting there is the things they're most fearful of about losing control of their disease, requiring surgery, or having longstanding inflammation leading to cancer, is we need to help connect the dots that the treatments we're giving them with medications, although they do potentially have some side effects, have such benefits, the major benefits being keeping them away from surgery and also decreasing that long-term risk of cancer. So again, talking about ulcerative colitis, it's I think interesting across the spectrum of disease from diagnosis and then to long-term complications.

And these shared medical decisions are also incredibly important at every step along the way. It's not just a one-time thing, but when you're making any treatment change, please do engage your patients. Make sure that you understand the type of decision maker that they are. Use as clear communication as you possibly can, and always remember to make decisions with your patients and not for your patients yet. “Give them the advice that they're looking for, which is what you think is the right thing, and see if they agree and if not, pivot towards where their worries are and help come to a plan so that at least they're doing something to manage their disease and not waiting until the next appointment to make a change where things might get out of control and lead to further complications. So thanks for your interest. I hope you learned a little bit about shared decision making and ulcerative colitis and why I think it's a very, very important and interesting concept working with our patients with IBD. Thank you.