Susan Tofte, DNP, MS, FNP-C, Oregon Health & Science University 

Thank you to all 3 of you for participating in this rich discussion. I’d like to give you one last opportunity for any pearl that you might have that you want to share with your colleagues about taking care of patients with atopic dermatitis now, and then what we are going to be doing over the next year or two, as we learn more and continue to add to our therapeutic options. Do you have anything you would like to add?

My advice to my colleagues is for those who aren’t participating locally in journal clubs and meetings, do it because by doing so, you’ll meet incredible providers who share the same passion you do by improving the lives of patients. You’ll find other providers who speak your same language who you get along with and you’ll enjoy collaborating with on care for patients. The second thing is for patients to hang in there. We’re in this together. This is a journey. This isn’t a 1-gene condition. This is complicated, but we’re in it together, and we’re going to find the answers and stick with it until we find the answer that will make our patients become their best selves. I joke that my patients are my Prozac all day long because they give me such a high when they come in and they’re happy. You can see when they’re not happy, but it’s so empowering on my side and it’s a real honor to be in a position to ask them questions that nobody else can ask and to walk side by side with our patients in this journey.

Susan, do you have any words to your colleagues or to your patients or their families?

 It is a partnership, laying out the options treatment wise and weighing the risks and benefits, and all the other extraneous things, costs, and other things that influence the family. It’s also being the empathetic providers that we all are and that the patient knows you’re listening. That’s a huge aspect of any chronic disease, that patients need to feel heard and they need to know that you are listening and that it matters what they’re going through. We know statistically and scientifically all of the things about the diseases, but everybody’s different and not everyone fits into that mold. We need to be able to pull those idiosyncrasies out from the patient, knowing what has failed and helped, and you are there as their provider to get success for their disease and their quality of life and to be able to move forward.

If you have a patient who is not doing well on what we have available, you might want to go to clinicaltrials.gov and look at sites all over the country where children, adolescents, and adults with different types or different levels of atopic dermatitis might be able to participate in a clinical trial to help get the data needed to move forward. 

 The National Eczema Association [NEA] may have information about clinical trials across the country, so they may be a good resource for that as well.

 I encourage my patients to start their own local chapter of the NEA. Patients need to collaborate with each other and relate so they can help each other by sharing stories and know they’re not the only one. It’s insane to me how I’ll go in and see a patient, and they’ll feel so alone, but there are so many people out there suffering from this. They should never feel alone.

They’re going to seek answers through social media or through other online sources. They’re going to be seeking answers, and you can either direct them and give them the proper information, or they’re going to find it on their own, so we have to realize that and try to direct them to places that matter. Thank you for watching this HCPLive® Peer Exchange. If you enjoyed the content, please subscribe to our e-newsletters to receive upcoming Peer Exchange segments and other great content right in your inbox. Thanks to all 3 of you, and we’ll see you again soon.

Videos

Clinical pearls regarding the management of patients with atopic dermatitis with newer treatment approaches as the field continues to evolve. 

Optimizing Therapy for Patients With Atopic Dermatitis 

 Let’s focus on adequately addressing the inflammation and all of the other complexities that you need to in that visit, when you’re talking about sleep and the mental health that you were talking about with that person, and then the education.

There is a lot to have to go through, so it’s really not my goal to go through all of it in a first visit, or in just 1 visit. I’ve learned that, at least in my practice, there is a concept of progressive revelation. You can overwhelm the patient by saying, “You know that you’re going to get skin infections, and you’ve got a higher chance of having molluscum [contagiosum], and you could have warts, and now we’re finding out these other comorbidities.” We need to get people in touch with an organization like the National Eczema Association, and train your staff to be an extension of you because the nurses stay in the rooms afterward, and they can follow up with patient education. You have to address each patient visit a little differently. This is the art of medicine, and it’s hard to tell someone who’s brand new in dermatology and seeing their first patient with atopic dermatitis, these are the 5 points you must hit every time. The big points are giving them hope, finding out how this disease affects their life, asking those questions, finding out what kind of things they would like to do if their skin were clear, and then letting that guide in your decision-making process on which therapy it is. Even if that therapy ends up starting off being topical only, I always introduce the idea and let them know there may be things beyond creams that we may consider in the future. 

I’m always planting seeds for the next visit to talk to them about this disease. I try to emphasize that this is not just a disease that you see on the surface, but there’s more going on underneath the surface, and we’re learning about that right now and we may want to address those issues. If it’s an adult, I’m making sure that they’re seeing their primary care physician and doing their routine annual examinations and blood work, because we know that some of these other things may be cropping up because of this. I’m making sure my [pediatric patients] are keeping up with their vaccination schedule so I have options in the future, that parents are doing that and getting back to their pediatrician. The key is being a hope giver, a good history taker, and a good options presenter. If you approach it with that mindset, I think you’ll have patients who will be loyal to you and will trust you.

It’s going to be a challenge for us with so many new therapies to learn about in the next couple of years and try to have that evidence to guide them through that decision process.

 For folks who have not been in practice for as long who listen to this, it’s not beyond you. That’s one thing we want to leave everyone with. We thought that we’d be too overwhelmed in the psoriasis world with 11 biologics, but we now know that we can manage that and we’re capable of managing those things, and it’s important for us to take the time. Just like sprinters practice running all week long, this is our profession. Let’s take some time to participate in these events and read journals and keep up with things, but it’s worth the effort because you can see the lives of your patients change because of it.

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Strategies that can be used by healthcare professionals to help address patient concerns around atopic dermatitis.  

Atopic Dermatitis: Counseling Patients About Their Disease 

 Are there any additional thoughts on how you develop that rapport and relationship with patients to allow you to partner with them in the journey of managing their disease?

 I agree with Keri; it is a partnership. I tell patients even with other disease entities, we’re a team, and I can’t do all of this for you, so I expect your input if something isn’t working or if you’ve gotten into a bad flare-up. We’re on electronic medical records where I work, and patients have access to send me messages. I tell them, “If you’re having a bad flare-up, send me a message. I’ll find a spot to get you in sooner than the schedulers can get you in.” Having somebody they can reach out to like that is really important, as is being able to take the time to sit down with them and have a conversation to make sure their questions are answered. We’re all under time scrutiny and deadlines in our clinics to move on to the next patient, but these patients do take time, and they take more time than somebody who comes in for acne or something like that. It’s important to be able to either get them back for another appointment quickly, or take the time that day to go through all the instructions. 

Melodie, you had asked about whether dupilumab is the first thing I’d pull out of my toolbox for a patient who comes in. It’s like when you see a patient with really bad cystic acne, and you know they need Accutane. They shouldn’t have to go through any other treatment. They should be able to get right on Accutane, but they might not be able to because their insurance may not allow it, and this comes into play with these more severe patients as well. Even though it might be the treatment you reach for, you may not be able to get it right off the bat for them. That rapport is important to set up between you as the provider and your patients.

 One simple thing you can do is to ask the patient about their goals. Two numbers that I follow closely with my patients with atopic dermatitis are, how well are you sleeping, and how bad is that itch? I also do a DLQI, which is the Dermatology Life Quality Index questionnaire, a simple 10-item questionnaire that will allow me to help understand the burden of disease and help follow them through their journey. It’s another piece of the puzzle that helps me understand them as a whole.

 If you’re an NP [nurse practitioner], a PA [physician assistant], or a dermatologist who works in this field, and you don’t enjoy taking care of these patients, then refer them to a colleague because I’m sure there’s somebody else who would like to have this opportunity to partner with this patient. Don’t hesitate to refer out is one of my pieces of advice.

 I use the phrase a lot, “We’re family now,” and family takes care of each other, and family looks after each other. I tell them there’s a lot of hope. I try to be a prescriber of hope, to let them know we have therapies we’re going to do, and we’re going to work together because I think people come in, and you’re the last hope for them. Even if I can’t get them on the medication right away, I want to say, “We’re going to work hard to try to get you as clear as possible. I want you to feel that the future is going to be better for you. We’re going to try to help you get there.” I’ve had some very dramatic experiences where that has played a part. Now I’ve had 2 patients in my years of practice who have admitted that they were going to take their own lives and commit suicide but postponed it until after the visit when they came into our office. Because of the hope that we gave them, they decided to postpone that decision. Then they confided in me 6 months later or a year later that, “The day I came to see you for the first time was the day I had already written a note and had a plan, but I just decided to keep the appointment for no good reason. But now I know the reason was that I was meant to come in.”

I think sometimes we have divine appointments, so to speak, and I try to view everything as if it could be a divine appointment and try to give them that hope. For all of these disease states we deal with, people want to know we’re there to help them with it, and certainly paramount in that are patients with atopic dermatitis.

I refer my patients to the National Eczema Association, which is a wonderful patient advocacy group, and there’s a wealth of knowledge, caring people, and information for patients who want to affiliate with the organization. They do a patient care conference, which is in August this year. It will be virtual again, but I highly recommend that patients get plugged into that organization.

There is a necessity for collaborating with professional associations or patient associations, and then other people, like allergists and immunologists, pediatricians, and general health. Some of these people have struggled with a psychological impact from untreated disease or poorly treated disease. Sometimes it was because of the medical provider, but it’s mainly been that we haven’t had the medications needed to properly treat these patients.

Advice for healthcare professionals who treat atopic dermatitis to help them best manage patients and connect them to other supportive resources. 

Support for Patients With Atopic Dermatitis 

That brings up a really good point, because as they get clearer, I think at times [patients] often forget they have this condition. Our role is for our patients to wake up in the morning and forget that they suffer from atopic dermatitis. They start to incorporate some of those irritants that they think, “Oh, now I can use,” because their skin is clear and they just forget. It’s trial and error, and our role as advanced practitioners is to be their advocate. This is a journey; we’re not going to just see each other once. I need a commitment, a partnership with them, and I’m going to do all that I can to help them. There may be things along the way that may cause the natural biology of the disease to cause progression, but it’s long term, chronic, and it takes time. I empower my patient to know that we’re in this together and I want them to ask questions along the way. If our patients can find health care professionals who will be partners with them in managing this condition, there’s trust and communication. I’m doing all I can on my part and trust that my patient is not going to be afraid to open up and share their story with me, and they are coming prepared to each appointment with questions and concerns. They trust that I am keeping them informed as to the latest treatment options and updates. I love when my patients bring their medications with them during each visit so I can see exactly what they’re using and how much they’ve used since the last visit. It’s this understanding of their history and goals and being in an alliance together. If we do that, we will get much better outcomes.

 The bulk of what we need to discuss in this final segment is the role of advanced practice providers, of the NPs [nurse practitioners] and PAs [physician assistants] in the dermatology community, and our opportunity and impact on patients. I would like to know how the consultation goes in your clinic with your patients. Do they make an appointment specifically with you, and then you move through the diagnosis and the prescribing part of it and the education? Do you do it all?

Yes, that is correct. They schedule an appointment with me, and I’m along for the journey with them. I’ve practiced for 15 years, and some of my most cherished lessons have been rooted in my patient relationships because I listen, and I take the time to listen. Because I have the fortunate experience of being able to practice in the same office for that entire time, those relationships I’ve developed have been amazing. My patients are my family, and I treat them as such. It makes me look forward to going to work each day. I think because I have that partnership, there’s this trust and level of appreciation. They know I’m going to be straight with them, they’re going to be straight with me, and we’re in it together.

The importance of partnering with patients who have atopic dermatitis to best support them throughout their long-term journey with the condition. 

Susan Tofte, DNP, MS, FNP-C, Oregon Health & Science University

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