A Comprehensive Approach to Managing Chronic Spontaneous Urticaria and Enhancing Patient Care: A Q&A With Priya Bansal, MD

Priya Bansal, MD
Allergy, Asthma, and Immunology Specialist
Asthma and Allergy Wellness Center
St Charles, Illinois

Content in this advertorial article was created in collaboration with Novartis Pharmaceuticals Corporation who provided financial support for the content.

Introduction

In a recent interview co-hosted by Dermatology Times^® and HCPLive^®, Priya Bansal, MD, discussed common challenges associated with diagnosing and managing chronic spontaneous urticaria (CSU) and emphasized the importance of a patient-centered approach to care. This article summarizes her interview in question-and-answer format.

Q: From your perspective, what are the most common disconnects between doctors and patients when discussing CSU?

There are 2 parts that may commonly lead to a disconnect. One is that patients come in and want us to find the cause. They connect urticaria with an allergen, because hives may be connected to an allergic reaction. They become frustrated because they believe you should be able to identify an allergen, but you often can't find one. Even in the literature, allergens do not directly link with CSU. I try to convey that there is no external trigger of CSU. Certain biomarkers are sometimes connected, but, in general, we can't say, “This is the food; stop eating it.” Unfortunately, that's not how it works.

The second part that can cause a disconnect may be that the tailored laboratory work-up comes up clean; results don’t show issues such as connective tissue disease or thyroid antibodies, and patients may feel frustrated. If you convey that certain other diseases have been ruled out and say, “You’re going to be OK; we can manage this,” they may believe that you do not understand how severe their disease is and are not paying attention to what they’re telling you. What makes it difficult is when patients are miserable. They can't sleep at night. They’re itching all the time. They’re uncomfortable. Sometimes they experience swelling. Their ability to sleep, work, and carry out daily tasks may be affected. It’s important to them that their doctor really understands their experience and their hopes for their condition.

Q: Let’s say that an undiagnosed patient shares their experiences of CSU-like symptoms and their frustrations that no cause is found despite seeing multiple doctors. Knowing that a CSU diagnosis can sometimes take years to confirm,¹ how do you address the patient’s frustrations and establish a path forward to confirm the diagnosis?

Listen to them. Making them feel that they are being heard is a big part of it. Because, again, with CSU, patients often believe that they're being dismissed. So, I always say, "Look, think of this as a journey. It's not all been for naught. At least we know what conditions you don’t have, and now we can build upon that knowledge.” That acknowledgment may help them feel that they haven’t wasted their time. Then I explain to them that CSU does not have an external trigger, and I try to explain the underlying disease and why they may be having their CSU symptoms. I like to try to make them feel like they're not alone, which is important. I share that I see multiple patients a day with this.

Q: What strategies do you use to explain the internal etiology of CSU to patients searching for definitive answers?

It's tricky. Most of them don't want to go fully down the cascade. I say that there are certain markers affiliated with CSU. We talk about histamine release and how that sometimes causes their itching. I share that it's more of an internal process and that the immune system is not doing 100% of what it's supposed to do. We do know that CSU is linked with certain autoimmune disorders. In some sense, it’s an immune dysregulation that's causing the mast cells to become twitchier, which is going to release more histamine and cause hives. I talk to them about different types of hives; some are exacerbated by stress or sickness, although these stressors might not be the ultimate cause. I explain that CSU is the immune system in overdrive. Sometimes I'll offer a visual, such as, "You have a bucket of water. You can only fill the bucket so full before it starts to overflow…CSU is similar in that there's a histamine and other inflammatory mediator overflow."

Q: A real-world study that assessed the overall burden of CSU in 539 diagnosed patients found that approximately 70% of patients experienced anxiety or depression², while another real-world study that assessed the burden of CSU in 673 diagnosed patients whose symptoms persisted ≥12 months despite treatment reported disruptions in sleep and daily activities. What strategies do you use to ensure quality of life is addressed along with physical symptoms in managing CSU?

If you don't address quality of life, that is a disservice to the patient. The potential impact on patients’ daily activities is under-appreciated. I start with the urticaria activity score (UAS), which gives me insight into their burden. I also ask them questions such as, “Are you able to sleep? Do you think you get quality sleep? Do you believe that stress makes your symptoms worse?” If you don't ask those questions, you will never find out. You may have options to manage these symptoms. If you can get them a good night's sleep rather than itching all night, that is a huge stress reliever.

Regarding treatment, if patients tell me, "I've tried X, Y, and Z," I don't try to put them back on X, Y, and Z. I try to build from wherever they are. For instance, if they take an antihistamine in the morning and by evening it wears off and they can’t sleep, I focus on that problem spot. If they are struggling with mental health, I connect them with help if I think that they need it. Some patients really do need help in treating anxiety or depression at the same time as the CSU.

Q: Are there specific tools that could help them better articulate their quality of life?

I ask them whether they have taken a picture and if they want to show it to me. Many people call skin rashes hives that are not hives. With a picture, I can determine whether it looks like CSU or not. They also believe that I acknowledge and listen to them when I take the time to look at their photos. In our clinic, we do a PHQ-2 (Patient Health Questionnaire-2) depression screening as well. Using the urticaria and depression symptom scores and having patients share any pictures helps me to identify where the needs are.

Q: Do you use other strategies to engage with a new patient effectively?

In addition to what we’ve talked about, train your staff to instruct new patients to bring in their previous medical records, medication and supplement lists, and any photos they’d like to share. This ensures that you’re not starting from ground zero. If previous laboratory results weren’t received, the medical assistant can say, "We didn't get your laboratory results; do you mind going into your healthcare portal and pulling them up before the doctor gets in here?" Medical assistants could also encourage patients to bring in their journals or write down their questions before the doctor arrives. These practices help to validate patients and create efficiencies in the workflow.

Q: Approximately 50% of patients with CSU do not experience adequate relief with prescribed first-line antihistamines.³ What steps would you take to understand their previous treatment history?

I need to know what therapies they’ve tried, the general duration of treatment, and whether they were adherent. Some people think that treatment is a failure when taking their antihistamine every 2 to 3 days and then find that it works when they take it daily. I try to understand their definition of failure. Does it mean getting 1 hive or being covered head to toe in hives? Are the symptoms experienced daily? Do they occur every other day? What factors make them better or worse?

It's also important to acknowledge that they've done their best and that it’s not their fault. I say, “We’re in this together now,” and then I outline the next steps based on guideline recommendations. I ask patients how they feel about the different options and assure them that we are on this journey together.

Q: Are there specific CSU education tools or resources that you use?

I use and recommend allergy tools and information on The American Academy of Allergy, Asthma & Immunology website and The American College of Allergy, Asthma and Immunology website. Some companies may also provide educational resources for CSU online. I guide patients on where they can find reputable information from leaders in the field. The challenge lies in teaching them to be careful and selective, given the strong influence of social media. Patients will say, “This person in my Facebook group said they tried X, Y, or Z natural medicine. And this totally cleared it up for them.” It's tricky, because you don't want to completely discount what they're saying. You may want to say, “That's wonderful for them. And one size doesn't fit all.” If you think it's safe, you could say, “I'm OK if you go ahead and try this, but also be aware that there are other things out there that we can do to try to help you.” I do think there is a lot of good information on social media websites, but there is also a lot of misinformation, and patients need to know the difference.

Q: How do you approach the shared decision-making process? Do you make the decision and present it to patients, or do you allow them to come to you with information they received from social media?

A little bit of both. I believe in shared decision-making. Sometimes, I’ll take the lead. For instance, I'll say, “OK, let's do a trial for a week. And then, if you don't believe that you're getting what you need, we can try something else.” Or the patient will lead, saying, “I'm not going to eat gluten and dairy.” And I try to guide that decision by saying, “OK, I'm willing to let you try no gluten and dairy. But know that urticaria goes away quickly if it's related to foods. So, I would recommend that you try that for 3 or 4 days, but if you're not getting any better, then we need to move on with our next step.” Part of it involves acknowledging that as long as they're not hurting themselves or pursuing a dead end for weeks on end, their decision is reasonable. I tell patients that it’s like a choose-your-own-adventure book with different paths to choose from, and I’m not going to force them down one over the other. It is my job to tell them what the options are.

Their support system may also influence decision making. My older patients and pediatric patients typically come in with a caregiver who may be able to offer insight into their condition and may be involved in managing their condition. So, I am sure to take the caregiver's opinion into account.

Q: When you initiate interventions, do you allow for specific trial periods before assessing whether the intervention is effective?

Yes. The trial period depends on the kind of intervention. Regardless of the selected intervention, I usually recommend a follow-up at 2 to 4 weeks because of quality-of-life concerns. If patients have a high deductible plan and can’t afford that follow-up or are too busy traveling, I ask them just to call or send a web message to let me know how they’re doing in 2 weeks. This will also help boost their confidence in you as their physician and help them feel heard, which is important to establish at the beginning.

Antihistamines are the standard of care for CSU. So, when starting antihistamine treatment, step therapy is best as opposed to instantly starting the patient on a higher regimen, which can be very overwhelming. I might start them on an antihistamine given once or twice a day and then move up or add on from there if symptoms are not controlled. Once they are on therapy and their symptoms are well controlled, I might recommend a 3-month follow-up or a 6-month follow-up.

Q: Can you share any final insights regarding care of patients with CSU?

It is so important for physicians to make sure that they understand where each patient is coming from. You may be seeing 5 to 10 patients with CSU a day, but for them, you may be the only physician they've come to with all their hopes. Try to avoid feeling jaded about another case of urticaria and keep freshness in your approach and understanding with each patient. Just understand that a lot of these patients have been to multiple physicians or that they've tried everything under the sun and have missed work, missed sleep. It is important to understand where they come from and to be their biggest advocate.

Conclusions

When determining a treatment strategy for patients with CSU, Dr Bansal recommends a patient-centered approach that involves shared decision-making and evidence-based interventions. Appropriately managing chronic conditions like CSU involves not only addressing physical symptoms but also considering the overall burden of the disease and the patient’s emotional well-being. Encouraging open communication and understanding each patient’s unique journey fosters trust and enhances overall care for patients with CSU.

References

1. Goldstein S, Eftekhari S, Mitchell L, et al. Acta Derm Venereol. 2019;99(12):1091-1098. doi:10.2340/00015555-3282

2. Tat TS. Med Sci Monit. 2019;25:115-120. doi:10.12659/MSM.912362

3. Maurer M, Weller K, Bindslev-Jensen C, et al. Allergy. 2011;66(3):317-330. doi:10.1111/j.1398-9995.2010.02496.x