Shared Decision-Making in Systemic Lupus Erythematosus

Transcript

This transcript has been edited for clarity.

Liana Fraenkel, MD, MPH: Hello. My name is Liana Fraenkel, and I'm joined today by my good friend and colleague, Jennifer Barton, to discuss on this Care Cues episode how to facilitate shared decision-making in patients with systemic lupus.

Jennifer L. Barton, MD, MCR: Liana, we're talking about lupus today, which is a very complex rheumatic condition. When you're meeting a person for the first time and sharing with them that they have this diagnosis of lupus, what are questions or concerns that arise from the patient?

Fraenkel: For most of the patients that I've seen, this has not come out of the blue. They've had some expectation that this might be the diagnosis.

Interestingly for some patients, they're kind of relieved. They're kind of relieved to have somebody tell them "This is what's going on." They at least have an explanation for why they're so tired or why they've been having so much joint pain and brain fog and rash and all these other things; there can be so many different symptoms associated with lupus. It's important to understand that this is a loss for people; they're dealing with a loss of their health.

Jennifer, in your opinion, why in general is shared decision-making so important?

Barton: It's important on multiple levels. One is that when we involve patients in decision-making, they tend to be more satisfied with their care, they're more knowledgeable about their condition, about the options. In some instances, they may adhere better to the treatment choice that's decided between the patient and the clinician. Overall, it's a way to improve care for our patients and engage them.

Fraenkel: But shared decision-making can be used for all preference-sensitive conditions, whether or not both options are as effective. How have you thought about this when you're engaging patients in shared decision-making, when you have two options that might be rational, but maybe one doesn't work as well as the other? What kind of trade-offs might you consider in those preference-sensitive decisions?

Barton: With shared decision-making, it's important to describe and explain the pros and cons of both options to the person in front of you, and then really elicit from them what are their values and preferences regarding some of those pros or cons. Incorporating that into the decision-making process is really important.

So, while we may feel in our minds that one option is better or much better, if the evidence shows that they're both equally effective to a certain point, it's important to share that fact that, A, there are options and, B, here are the risks and benefits of those options. And then really try to elicit from the patients what's important to them.

Are they intending to have a pregnancy in the next year? Just a simple question like that — it's so important to understand what's important. Some patients may say, "I'm done with having children" or that it's not a priority, that the priority is really saving my kidneys, avoiding dialysis, avoiding a transplant. So, it depends on the person in front of you.

Fraenkel: How do you go about helping your patients get to the place where they have enough information to engage with you on what is the best treatment plan to follow?

Barton: Checking for understanding is important. Obviously, if you have a person with limited English-language proficiency, have an interpreter present — not a family member, not the nurse in the hallway, but someone who is trained medically to do interpretation. I think that is really important, to check for understanding.

When someone says a medicine has some risk for infection, that can mean different things to you and me. [For the patient]: "Does that mean I have to take a pill? Does that mean I have to take an infusion and be in the hospital?" To clarify what we're talking about, to make sure that we're on the same page, is really important.

Again, that's opening it up for questions, for checking for understanding, using plain language; we can all benefit from clear communication and plain language — breaking it down to one or two or three pieces of information, but not overloading, which you mentioned.

Sometimes, appropriate educational materials — if people want to read something or access videos — can be helpful to augment those conversations. Time is an issue, but so is someone's health and potential. Some of these really serious manifestations of lupus need our time. They require these conversations.

Liana, when we're in the clinic visit and talking about lupus and the possible treatments, there are often barriers, either to access to care or to conversation. Could you share some of your experience, some of those situations, and how you've approached them?

Fraenkel: I've learned over time not to assume what those barriers are. I try really hard not to make assumptions and to ask, because people experience different barriers. And some of those I might not even have in my brain; I might not have thought about. So I typically ask, "I noticed that you weren't able to get to your last appointment. Can you tell me what's going on? Are there things that we can do to help you with that?" Or "What prevented you from coming?" And sometimes you'll get the answer that you expect: "I didn't have childcare" or "I couldn't get transportation."

And sometimes you hear things that maybe you can help with, like, "The timing of the appointment is off and I'm at work." But frequently, this is not so much a barrier related to a specific phenotype of a patient. It's related to social determinants of health. And I think we're all more aware of those now; asking about those is really important.

Sometimes that will influence the treatment plan. If people can't get to the clinic as often for monitoring, maybe you're going to choose something that requires less frequent visits. Maybe you're going to think about doing some telemedicine in the interim between visits.

We assume that health is someone's number-one priority. Without that, it's hard to get to work. It's hard to do everything else. But for many patients, when I've asked, health is not their number-one priority. Their health comes second or third or fourth. Many patients don't have the privilege of putting themselves first. They're taking care of their children or their grandchildren or their neighbor. For many people, that is their number-one priority. And I need to respect that and work with that. You can't just tell patients, "You know, you need to come to clinic." We need to respect and understand what the rest of their lives are about and how we can work with that. We don't want to put more demands on them. We're trying to improve their quality of life.

Do you have any interesting stories of the ways that cultural differences influenced how you've had shared decision-making conversations with your patients?

Barton: There are varying degrees of familial involvement, in terms of children or deference to certain family members. Making sure you know who's important and the structure of the family unit and involving those people in the discussion — I think that is important. Again, we only are going to understand these things if we ask and observe and try to identify what our patient's thoughts are about that. Ask open-ended questions to the patient. They may say, "Well, you know, X, Y, Z" in terms of family constraints or inability to make certain changes in terms of diet, or if we're asking people to walk every day for 15 minutes. People may say, "I don't have sidewalks in my neighborhood," or "There are no trees and it's 120 degrees out."

In regard to shared decision-making specifically, we tried to develop our tools in three languages, with input from lots of different people at different literacy levels. It's impossible to do that with the hundreds of different languages in the world, but trying to at least incorporate some patient involvement, caregiver involvement, when developing these tools, is important too.

Fraenkel: Dr Barton, it's always wonderful chatting with you about a topic that is so near and dear to our hearts. It's been a real joy talking to you today about your decision-making process with your patients with lupus.

Barton: Dr Fraenkel, it's always wonderful to talk with you as well. Thank you so much for a great conversation.

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