Welcome to the fifth episode of our podcast series, “Atopic Dermatitis In Skin of Color.” The podcast series examines the importance of diagnosing, managing and treating atopic dermatitis, or eczema, in people of all skin colors. This episode is “Shared Decision Making for Atopic Dermatitis & Your Healthcare Team.”
The podcast is a joint collaboration between Allergy & Asthma Network and The Itch Podcast led by co-hosts Kortney Kwong Hing and allergist/immunologist Payel Gupta, MD. In this episode, Kortney and Dr. Gupta welcome Allergy & Asthma Network President and CEO Tonya Winders.
You can also listen to or download the podcast on ItchPodcast.com for listening anytime, anywhere. The podcast can be downloaded at:
In this Episode…
1:40 – Who is involved in a patient’s atopic dermatitis management plan?
2:55 – How telemedicine can benefit atopic dermatitis patients
6:05 – Tonya Winders on the role of the nurse in AD care
7:40 – Atopic dermatitis training for nurses
8:30 – How nurses can play a role in diagnosing AD
9:20 – The different levels of nursing, including nurse practitioners
11:44 – Having a nurse on your healthcare team
13:25 – Taking a more holistic approach to AD care
15:08 – What is Shared Decision-Making?
17:22 – Talking with your doctor about Shared Decision-Making
18:34 – Discussing insurance and your out-of-pocket costs with your doctor
23:10 – Shared Decision-Making tools
26:14 – The nurse’s role in patients’ quality of life and psychosocial issues
31:18 – The role of the pharmacist in AD care
32:28 – How shared Decision-Making can help people with skin of color
Kortney Kwong Hing: You’re listening to The Itch, a podcast exploring all things allergy, asthma and immunology. I’m your co-host Kortney, a real-life allergy, asthma and eczema girl.
Payel Gupta, MD: And I’m your second co-host, Dr. Payel Gupta, a board-certified allergy, asthma and immunology doctor. Kortney and I hope to balance each other out so that we get you all the information that you want and need about allergies, asthma and immunology.
Kortney: Today, we will talk about Shared Decision-Making and who can help you manage your atopic dermatitis other than your doctor. As a quick recap, and you are probably sick of hearing me talk about this if you have listened to all our episodes in the series, but here we go: this is the final installment of our 5-part series in “Atopic Dermatitis in Skin of Color.”
We have covered a lot in our past four episodes, including what is atopic dermatitis, why we are talking about it specifically for skin of color, how AD is diagnosed, how to manage your skin and what treatment options are available? So go listen to those if you want a base understanding of AD in skin of color. Today we’re going to be talking about Shared Decision-Making.
What you may not realize is that your doctor is just one of many professionals who can help you on your atopic dermatitis journey. And there is actually more than one type of provider who can help. We are going to get into this and how you can be a part of shaping the best management plan for your AD while working with your entire healthcare team.
Dr G, who can be involved in a patient’s atopic dermatitis management plan?
Payel: Eczema, or atopic dermatitis, is managed mostly in the office setting. So the office setting providers would primarily be a primary care doctor, an allergist or a dermatologist, a physician assistant that works with an allergist, dermatologist or primary care doctor, or a nurse practitioner who is also trained in allergy or dermatology.
So patients with mild diseases are usually managed in a primary care setting. Anyone with moderate to severe disease should be taken care of, in my opinion, by a specialist ideally – which would be an allergist or dermatologist, or someone working with an allergist or dermatologist.
It is not very common for a patient with eczema to be treated in the hospital, but very rarely, for patients with severe disease or other conditions that can cause complications with eczema, such as severe infection, we may need to use the hospital.
Kortney: What about telemedicine? Is that an option for patients with atopic dermatitis who don’t have access to a dermatologist or an allergist?
Payel: Telemedicine is a big part of healthcare now. As many of you know, I have predominantly gone into telemedicine also. And from my experience and from everyone’s experience since COVID-19 of seeing a doctor through telemedicine, we know there are so many conditions we can in fact treat via telemedicine. We don’t have to physically see patients in a clinic. Skin conditions are one of those conditions where we have been using even prior to the pandemic.
Dermatologists have actually been pioneers in telemedicine in a lot of ways. The reason for that is because with skin conditions, we rely a lot on patients’ pictures anyway. So a lot of times patients will come in and say, ‘You know it doesn’t look as bad today but let me show you a picture of what it looked like last week.’ And so in medicine the most important thing is understanding the history of the disease, how it has been managed, and also being able to see the disease.
So with a condition like atopic dermatitis, you can do all of those things via telemedicine. Really the only thing that should be done in the office that may be relevant to atopic dermatitis is an initial biopsy that some patients might need if their history and exam don’t completely go hand in hand.
Kortney: That makes a lot of sense because I know I take pictures all the time of how my skin looks because sometimes I think, ‘Well, I’m going to see the dermatologist next week and I look pretty good.’ However, are they going to believe me? Are they going to believe that I felt the way I felt last week? So I keep a visual diary of my skin. I can see how that would work out really nicely, to just see a doctor over telemedicine and most of the time they are not even looking at your skin directly.
And I also have to say that’s really exciting for people who have a hard time accessing dermatologists like I do – that there is another option, which is telehealth.
Payel: Yes, Kortney, that is such an important thing that I didn’t emphasize in my answer, is that telemedicine really does allow us to provide access to specialists, especially in rural and urban settings where it might be hard to get an appointment with a specialist. So I think that is one of the key factors in this, also.
Kortney: Great. To help us along in this conversation, we have asked Tonya Winders, President and CEO of Allergy & Asthma Network, to join us and talk about the nurse’s role and Shared Decision-Making. Not only is Tonya an advocate, but she is a mom who knows all about what it is like to live with a child who manages atopic dermatitis. She shares both her professional and her personal perspective with us. So let’s jump into our interview with Tonya and learn about the role of the nurse and Shared Decision-Making.
Tonya, we know that you have recently written a paper about the role of the nurse and how they help care for atopic dermatitis. Could we start by just understanding how a nurse fits into a medical practice and what that looks like so a patient can differentiate in terms of what a nurse does, what the doctor does, what the receptionist does, and who is doing what in the office?
Tonya Winders: Well, this does vary across settings. A lot of times we think about nursing in the hospital setting and maybe being that bedside person. But what we’re talking about here in that role of nursing in atopic dermatitis is really more of that outpatient setting. This is where the nurse comes alongside you and walks you through how to live with a chronic disease, especially atopic dermatitis.
So that role and that function is much more focused on education, on daily self-management skills, perhaps avoiding things that could make your atopic dermatitis worse. There’s a whole myriad of things that an atopic derm nurse can help you and support you through that journey.
It’s also a really important person to help connect you to other services. So let’s say you’re struggling with the psychosocial aspect of living with eczema. That could be that conduit to other health professionals. So we really advise clinics that are doing a lot of atopic derm, especially in the moderate to severe category, to ensure they have got someone on their team that has nursing credentials but also is really focused on patient education and support.
Kortney: I’m curious to know, is the nurse specifically trained in atopic dermatitis? Are they doing courses so they know how to talk to patients with this condition?
Tonya: Yes, so in countries like the Netherlands and Ireland, this is routine, that there is a trained curriculum around the basics of atopic dermatitis and eczema. And certainly they have a formal training but there are no credentialed programs today.
This is something that we would like to see, similar to what we have in asthma with certified asthma educators and diabetes educators. We think this could be a helpful model for the atopic dermatitis-eczema space as well.
Kortney: I know that I’ve seen how a nurse can play a role in diagnosing atopic dermatitis. Can you talk about how that would look for a patient?
Tonya: Typically nurses are good at carrying out orders. So they help to support the diagnosis with that healthcare provider, the dermatologist or the allergist. They can support things like skin prick testing, patch testing, running the lab work that is necessary to work up that can determine what some of those underlying causes or triggers are.
And then I think the nurse is that person who is there in those interactions supporting the physician in those discussions. And so, again, I think it’s a multi-faceted role and may look different depending on the setting.
Dr. Gupta: I think it might be helpful also to define a nurse practitioner vs. a registered nurse, because nurse practitioners have more of that clinical role and they have a similar role to what physicians or physician assistants would have in clinical care. I think people sometimes may get confused with all of these different terms and different healthcare providers.
So I just wanted to point out that there is something called a nurse practitioner and they have additional training in order to be able to prescribe independently. The nurse practitioner also often has independent hours and does not directly associate with another doctor or clinician, per se.
Tonya: Yes, great point, Dr. G. Definitely we have to remember there are various levels of nurse. So you have your LPN, which is a 2-year program. Then your RN, which is a 4-year program. And then you have an advanced practice nurse, and that often leads to a nurse practitioner credentialing here in the U.S. So it’s very important to know your provider, know their training, and help to frame if that person has the credentials and the ability to diagnose and prescribe, versus just supporting the prescriber.
Kortney: It sounds to me that the role of the nurse in this case can really also help with the psychological aspect of living with AD. From what I’m hearing, the nurse spends more time with the patient than you would normally get with your doctor. Is that a correct assumption?
Tonya: Well, that’s been the experience with those atopic dermatitis nurse roles in clinics that we’ve worked with. They do certainly get to know the patient and they spend a lot more time one on one talking with the patient. What are the struggles, what are the goals, what are the aims of that patient in their management plan?
And so helping them develop that atopic dermatitis management plan and really listening to their main concerns. Is it about appearance? Is it about their sleep disturbance? Is it about the side effects of medication? I mean, there are so many different facets of living with atopic derm over time, so I really think the nurse can be that extra set of listening ears that supports you in your journey.
Kortney: That makes a lot of sense. Is there a way for patients to know whether there is going to be a nurse on their medical team?
Tonya: So this is one of the questions we often encourage people to ask up front. Who is the care team there at your office? What does that look like? What kinds of support may be offered either in the clinic or optional to add on? At Allergy & Asthma Network, we actually have developed a digital health telehealth program for asthma and we are looking at the possibility of having that additional support in atopic dermatitis like we do in asthma and also food allergy coaching. These are people that would formally complete credentialing or modules that would give them that added insight and understanding to that specific community and their needs.
Dr. Gupta: So that would be an additional resource that they could use?
Tonya: Exactly. Right now we have that available for food allergy and asthma patients. And we offer those services and support for those individuals that are living with those chronic conditions. This would be a similar type of offering. Right now that is done by nurse practitioners and PAs who also carry a certified asthma educator credentialing on the asthma side. And then on the food allergy side, it’s licensed clinical social workers, mental health professionals who have their credentialing and have gone through an additional 12 modules just around managing food allergy.
Kortney: It sounds like your atopic dermatitis team needs both sides – you need both the clinical side and the psychological side, because I know personally one of my biggest triggers is stress and figuring out those triggers is not easy. It sounds like you’re moving toward a more holistic team in terms of how you would manage atopic dermatitis. And I like what I’m hearing – that we’re seeing this as a chronic long-term condition and it’s not just something you just lather some cream on and forget about it tomorrow.
Tonya: You’re so right, Kortney, and we’ve heard about it time and time again from countless patients. This is more than skin deep. I’ve lived with it in my own family. I have a 19-year-old daughter that has moderate atopic dermatitis. The hardest days for us were when she was choosing a prom dress, or when she wanted to go to a swim party, and she was uncomfortable with the way her eczema looked in those more revealing clothes. Or when she was dealing with the disappointment of yet another failed treatment. Those sleep disturbance nights where she was scratching and itching all night long. And she woke up and just did not feel 100 percent and ready to go to school and give her best.
So I think there are so many things that often it takes coming into that relationship with a provider that is an extension of your physician to really get to some of those nuanced concerns.
Kortney: I know for me, my dermatologist is the doctor I feel most vulnerable with and it has taken me a while to find one who I feel comfortable with because I know it’s not just something I need to worry about today, but it’s something I need to worry about long-term. And I’d like to have a relationship with my doctor so that is a long-term treatment, management plan and, like I said, relationship.
Talking about your relationship with your doctor, there’s a term called Shared Decision-Making which I think is very important as a patient. I would love to unpack that. What does Shared Decision-Making mean? And then, how does that look in practice?
Tonya: Shared Decision-Making is a topic I love to talk about. Because it is working around a pretty traditional, authoritative healthcare system – which occurs around the world and definitely here in the U.S. – where it says, ‘I’m the doctor, you’re the patient, I’m going to diagnose you, prescribe something to you, and then I want you to go and do it.’
And it’s taking that and flipping it to where we’re coming more as equals to that table knowing that the physician is the expert in the science and in diagnosing and offering treatments to that patient. But the patient is the expert in their own lived experience and their journey, and in what matters most to them.
So Shared Decision-Making is really about asking the most important question. Rather than ‘How are you doing?’ from a doctor’s perspective, asking the question, ‘What is most important to you? What is your greatest challenge in managing your eczema? What is eczema keeping you from doing what you’d like to be doing?’ And if you change just that one question, immediately you level the playing field and it becomes more of a Shared Decision-Making process.
It is also important to find a provider who is willing to go with you on this journey. Realize that they may not have all the answers. Share the pros and the cons, the risks and the benefits, the various treatments that might be right for you, and then allow you as the patient to make that decision. Rather than the doctor making that decision, it really is more of a shared decision that is led by the patient and by what they want.
And it really doesn’t take that much time or energy, it is just changing the mindset and shifting the power in that relationship to a centered, shared power rather than the typical authoritative or paternalistic approach that most providers tend to adhere to.
Kortney: Thank you. That’s a really great explanation. So Dr. G, as a patient, how can I approach my doctor in terms of having this more Shared Decision relationship?
Dr. Gupta: That’s a great question, Kortney. I think it is all about asking about your options. If you get presented with a treatment plan and you feel like there aren’t as many options and you’re only given a choice as to whether you want to do it or not, that’s not really Shared Decision-Making. Although it can be a form of it because sometimes there is only one option potentially for your treatment plan. You’re either on board with it or you’re not, but it’s asking for suggestions from your doctor. Are there any other options if you don’t feel comfortable with the treatment plan that you’re being presented with? Or making sure you voice concerns, for example if it’s an injectable medication and that doesn’t make sense to you, or you don’t understand how that’s going to fit in. It is just important to voice those concerns and not be scared to do that. And I think that lends itself to more of that Shared Decision-Making and the interaction with your clinician.
Kortney: May I ask a more personal question – but I think this also impacts our listeners. Navigating insurance and navigating what comes out of my pocket and what comes out of my insurer’s pocket, how do I bring up my financial situation with my doctor? How do I say, ‘That sounds great but I don’t think that’s realistic for my insurance plan.’ Or, ‘I would really love to use those ointments every day but that is just way too expensive for me.’ I know that is a huge barrier for people and those are uncomfortable conversations to have when you’re feeling that vulnerable. Can you give us some tips on how to have that conversation?
Tonya: Yes, it is so important. We encourage patients to work with providers that actually use a systematic approach like a Shared Decision Aid. It is going to have costs addressed there. It is going to tell you which is a low-cost solution or a higher-cost solution. But it is so individual. Here in the U.S., we have 5,000 different health insurance plans, right? A doctor cannot be an expert on all of those. But asking them up front, ‘What is the average out of pocket cost for this solution or for this treatment?’ I think this is a way to take it off your own personal financial situation and show you are a concerned patient. You need that information in order to decide what is the best treatment for you.
A doctor can prescribe all day long. But if a patient cannot afford that medication, or if they are forced to choose between putting food on the table or having a roof over their head, or getting that medication, then it’s a no-brainer. We’re always going to go through that basic hierarchy of needs. And I think that is the real challenge here: approaching these conversations in a way and using Shared Decision Making that helps you elucidate and bring that light to patients so they don’t have to be that uncomfortable asking the question. Or even just giving the patient the information so they can contact their own individual insurance provider and learn more about what my out of pocket cost will be. And not committing to a treatment until you weigh all those decisions.
Oftentimes in the best Shared Decision-Making conversations are left without a decision. And the doctor will say, ‘Let’s revisit this at your next visit in two weeks or four weeks. Go home. Think about it. Do your homework. Research. Because we need to be confident that the decision we’re making is the best one for us.’ That’s the only way to ensure adherence and compliance to the treatment plan.
Dr. Gupta: I agree with everything that Tonya just said but I also want to add that as a physician and a clinician, I personally always bring up costs with my patients. I always say, ‘I am not the pharmacy. I don’t know what happens when you go to the pharmacy.’ As Tonya said, there are 5,000 different insurance plans. So even if someone asks me, ‘What is the average pay for X, Y or Z medications?’ I would not even be able to tell you.
And that is an honest answer because there are certain insurances where you have a $10 copay for your medications and then there are other insurances where you are really going to be paying the full cost. And the full cost is always variable.
And so I think ultimately, for me, your clinician is someone who cares about you, and wants to know all of the different factors that are relevant in taking care of you. And if cost is an issue with you, it’s nothing to be embarrassed about. It is something that I really want to know and understand so that, like Tonya said, we can create a treatment plan that will work for you.
I always tell patients at the end, like for asthma there are multiple different inhalers and for eczema there are multiple different ointments. If you get to the pharmacy and it is super expensive, let me know because most likely there is an alternative that I can prescribe for you.
So that is always something that I bring up, me personally – maybe it’s because I live in a metropolitan area and I serve patients in this area, but I think cost is a very important and relevant part of medical care. And I want to give the message that it is important to talk with your clinician. It is nothing that you should feel embarrassed about or that it is not relevant. Because I think all clinicians will tell you they understand how relevant it is.
Kortney: That’s really comforting to hear. Back to something you were saying earlier, Tonya, about a Shared Decision Aid. Can you tell us a little bit more about that?
Tonya: We are so excited about these. We have developed them for asthma, for food allergy, for atopic dermatitis and eczema, for many different conditions. You can go to the American College of Allergy, Asthma & Immunology website – ACAAI.org – and look up Shared Decision-Making aids. Or you can go to AllergyAsthmaNetwork.org and search for Shared Decision Making aids, and we have links there as well.
These are really easy to use charts that have all the various treatment options. You can talk about the pros and the cons of each, talk about the side effects profile, talk about the indication. You get some indication of cost. We do it typically like Yelp with $1 sign, $2 sign, $3 sign. The injectables – the biologics – tend to be more expensive solutions than your over-the-counter topicals or even some of your generic topicals.
The Shared Decision-Making aids are there and they are intended to be used in the context of a conversation. They’re never intended for you to make the decision independently. Again, you did not go to medical school, you don’t know all the training, you don’t know the specifics of the medications, and you may not even know the specifics about even your condition to which your doctor may have insight – such as those underlying causes of your eczema.
And so I think it’s important that these are Shared Decision aids that are supposed to be used in the context of that conversation with your healthcare provider.
Kortney: Those are super helpful. I know that Dr. G also says to you, ‘Write down your questions on your phone so that when you get to the office, you know what you want to ask.’ It sounds like these are one step further.
And it can help you remember what your doctor said because I know that in our previous episode about treatments there are a lot of terms that I have heard but could probably not repeat to you! It’s nice to have that on a piece of paper so that when you get home and research it later, you’re not trying to rack your brain about how you’re going to spell Crisaborole, or something like that.
Tonya: Exactly. Because it can be very overwhelming. And it’s changing all the time. Just here in the United States, we now have the JAK Inhibitors that have been approved for atopic dermatitis. I think it can be really hard to keep up on everything, and the truth of the matter is, you may be a daughter, a sister, a friend, but oh by the way, you may also have eczema. You don’t want to be defined by your disease, right?
So find a provider who understands that, who is willing to go along with you on your journey, and is willing to listen at least twice as much as they speak. That is really the premise of a Shared Decision-Making conversation. The doctor should not be the one doing all of the talking.
Kortney: So quality of life has become a really big topic for allergic conditions. And I know quality of life and psychological health go hand in hand, especially with atopic dermatitis where stress is a trigger. Can you talk to us a little bit about what the nurse’s role looks like in that? And also what you know about how patients are responding to that?
Tonya: Sure. Each and every day at Allergy & Asthma Network we get calls from patients that are struggling living with atopic dermatitis. And the concerns sometimes are about out-of-pocket costs and the financial strain of that. Sometimes it’s about the itch and scratch cycle, and just the frustration of that.
But a lot of times it’s just about the isolation that they feel and the psychosocial aspect of the disease. When your skin is flaring and you don’t feel confident about who you see in the mirror, then it does begin to play mind games with you. You do begin to doubt yourself as a person. You begin to doubt whether anyone is going to love you for who you are, looking as you do on the outside.
I had this conversation with my own young adult daughter and even intimacy. Having flares and not wanting to be touched. And yet when you start dating, or when you get into a sexually intimate situation, how are you going to do that?
So we have had these types of conversations that oftentimes people may not be able to have with their mom, or their family member, or their friends. So certainly an AD nurse can be a person who can have those types of candid conversations about the psychosocial effects and some of the isolation and intimacy issues that often arise.
Kortney: Yes, it sounds like this could be a really good tool to have as a young adult. These things are definitely top of mind but mom may not be the number one person you want to talk about intimacy.
So it’s nice to know there is a resource that is not necessarily a psychologist that you can go to ask these more vulnerable questions. And they can help you find the right direction or another person to talk to so you don’t feel like it’s a huge burden on your life.
Tonya: It’s also in the community, right? Connecting with other people in a community that is authentic and are going to address some of those more sensitive topics. I think that’s why online forums are so powerful and why patient advocacy groups are trying to provide that sense of community and belonging and support. Even if you don’t feel comfortable asking your doctor or even an atopic derm nurse, or your mom, then maybe talk with your friend who is also going through this, living with it halfway around the world, in your online community.
Kortney: Everything you said was so great, Tonya. You know I didn’t like getting hugged when I was younger, I didn’t like getting touched. It was a really big problem between me and my mom. And I realized later in life I was uncomfortable when my skin was flaring.
Tonya: Yes, Kortney, that was my testimony at the FDA PFDD meeting. It hit me when I was preparing my comments. You know, I’m a mom of five children and I never understood why of all of my children my daughter with eczema was the ‘touch-me-not.’ She really was. She did not like to be touched, even as a baby but especially as a young person and a teenager. And I’m a very touchy, feely person.
So it created a conflict in her feelings and then one day it just really hit me that it was because it hurts. She was actually able to say, ‘Mom, it’s not because I don’t love you, or don’t want to express my love for you. It’s that it is physically uncomfortable.’ And it was a real light bulb moment for me.
Kortney: Definitely. It’s what I told my husband, too: ‘It’s not that I’m not attracted to you. It’s that I don’t want to be touched. I don’t want my clothes to touch me, either, so it’s not you.’
Tonya: Exactly, exactly. Having those conversations is not easy. It’s really not.
Kortney: It’s hard to let people know you don’t want to be touched. And I’ve had to physically wiggle out of people’s way.
Dr. Gupta: So this was great. I think we brought up so many important aspects to taking care of atopic dermatitis and honestly any chronic condition. It is very important to remember that multiple people can help in the journey.
I wanted to also mention that your pharmacist is another really important member of your care team. They can help you determine what alternative options are that might be cheaper for you and more cost-effective for you. and that you can then have your doctor prescribe. Trying to find a pharmacy where you feel supported is important.
Kortney: Great point. I live in Germany, and I did not realize the role of the pharmacists until I lived here. They play a really important role helping you understand what has been prescribed and also how to manage your conditions. They double-check to make sure I know how to use my medicine. I know my pharmacist has helped me find the right creams and even taught me how to wet wrap. So I have to say that I love my pharmacist and I’m really happy that you brought that up.
Are there any other points you wanted to bring up before we end this episode?
Payel: Well, I just want to say that these considerations are important in all populations, but as we discussed, in people with skin of color we know that there are so many more complications that can cause issues with quality of life. We need to be even more cognizant of all of these things.
We have discussed the skin discoloration that can cause emotional distress but we also have research that shows that people with skin of color are not always given all of the options in their care that other populations are given. So it is even more important to use these Shared Decision-Making tools and also to use every single member of your team to make sure that you are really taken care of well.
Kortney: Yes, we will definitely link to those Shared Decision-Making tools because they are great ways to have conversations and they also outline all of the options that are available for people.
And on that note … that was a lot of information. That was a really great episode to end our Atopic Dermatitis in Skin of Color series in partnership with Allergy & Asthma Network. Thank you for tuning in. If you found this series helpful, please rate and review the podcast and share with your friends so we can continue to spread more awareness about atopic dermatitis in skin of color.
Dr. Gupta: Thank you for listening to today’s episode. Remember that all information you hear today is for informational purposes only and are not intended to serve as a substitute for the consultation, diagnosis, and or medical treatment of a qualified physician or healthcare provider.
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