The Role of Patient-Centered Communication in Alopecia Areata Treatment, Part 1

This two-part podcast series features Victoria Barbosa, MD, board-certified dermatologist and director of the Hair Loss Program at the University of Chicago. Drawing from more than 25 years of clinical experience, Dr Barbosa explores how to deliver practical, empathetic, and culturally responsive care for patients with alopecia areata. Through real-world examples, personal strategies, and actionable insights, she provides health care professionals with the tools to improve communication, support emotional well-being, and implement individualized treatment plans for a diverse patient population. 

In this first episode, Dr Barbosa introduces the foundational principles of patient-centered communication in the context of alopecia areata. She reflects on why many patients seek second or third opinions and emphasizes the emotional and cultural complexity that hair loss often carries. From health literacy and time constraints to racial and cultural sensitivity, Dr Barbosa outlines how thoughtful communication can strengthen trust, improve outcomes, and ensure that patients feel seen and heard. This episode is a compelling call for clinicians to rethink how they show up for alopecia patients—beyond just diagnosis and treatment. 

For more insights, visit our Alopecia Areata Expert Insights: Addressing Key Challenges and Advancing Patient Care webpage.

Dr Victoria Barbosa: Hi, my name is Dr Victoria Barbosa. I'm a board-certified dermatologist and an associate professor in the Section of Dermatology here at the University of Chicago. I also am the director of the Hair Loss Program here. I've been in practice for over 25 years. And, at this point, my practice is about 90% care of people with alopecia. So, I've had a lot of experience in taking care of people with all types of hair loss, including alopecia areata. 

One of the things that's really interesting to me in clinic is that I am often not the first dermatologist that our alopecia patients seek care from. So, sometimes, I'm the second, the third, or even the fourth dermatologist. And so, I ask patients why this is. I'll often say, “You know, you've seen a lot of smart people. How can I help you? What can I provide that you haven't already received from these other great doctors that you've seen?” And sometimes, they just want a second opinion, or sometimes they say, “You know, I've got a great home dermatologist, but I just wanted to see a hair loss specialist.” 

But, honestly, one of the most common reasons that people say that they're seeking care from me—their second or third or fourth dermatologist—is they say they felt rushed, or they felt that hair loss was dismissed by their previous dermatologist. And that's really heartbreaking to hear, right? Because we all know that we want to take great care of all of our patients. And we don't always know when someone hasn't had a great experience, because they don't come back and tell you, “I didn't have a great experience.” They just go see someone else. 

So, you know, I recognize that we're all under time constraints. You know, I used to be in private practice. So, I know what that schedule looks like. And even here in academics, where I see maybe fewer patients a day—I'm still seeing 30, 31, 32 patients with alopecia a day. And as we know with the alopecia patients, it's not just the medical diagnosis and treatment plan. These patients come with just tremendous psychological burden of their disease that we also have to help them through. And that can be time-consuming. 
So, over the course of this podcast, I'm really excited to talk to you about the role of patient-centered communication in alopecia areata treatment. How we center the patient. How we communicate with them. How we empower the patient in a way that helps them feel well cared for and respected, seen and heard, in a way that makes them want to come back to you in your practice so that you can provide them your excellent care. 

So, I'd like to take a moment to just think about where the notion of patient-centered communication really stemmed from. And it really starts with patient-centered care. So, back in 2021, the Institute of Medicine published a report called Crossing the Quality Chasm. And the purpose of the report was really to take a hard look at how we get from where we are as a health care system to where we want to be. Sidebar: the Institute of Medicine is, of course, now known as the National Academy of Medicine. And while 2001 was several years ago, I think these premises still hold true today. 

So, the elements of high-quality health care identified in their report include safety, right? Health care should be safe, right? Minimize risk to patients. Health care should be effective, right? Based on our scientific knowledge and evidence-based. Health care should be timely. I think we all struggle with that. I don't know how long your wait time is. Mine is 6 months, which is crazy. But people should be able to access health care in a timely fashion. It should be efficient, right? We shouldn't be wasteful in terms of cost, equipment, etc. It should be equitable. So, health care really should not vary in quality based on the individual characteristics of our patients. I think we'd all agree that excellent health care for all is our goal, right? And the sixth pillar is patient-centeredness, right? So, care should be respectful of and responsive to our individual patient needs, their values, right? Based in their preferences, in combination with our knowledge as physicians and other health care providers. 

So, ultimately, the goal of patient-centered care is to achieve better health outcomes for our patients, right? By, again, aligning our knowledge with the patients' circumstances, their belief system, their values. So that we can increase their acceptance of our treatment plans, compliance with our treatment plans, their health outcomes, and their satisfaction with our care and their care. 

So, I have spent a lot of time over my years in practice thinking about and being very intentional with how to communicate with patients, and particularly with alopecia patients. So, I think about communication being clear, open, and honest, right? I often will joke with my patients, you know? Because sometimes—again, with alopecia patients in particular, sometimes we have difficult news to deliver. And I will joke with them. And we all develop our own sense of how we want to establish rapport with people. And I'll tell them, even though I'm in Chicago now, I'll say, “You know, unfortunately for you, I'm a New Yorker. So, I'm going to give it to you straight with love in my heart. But I'm going to be honest, you know?” 

So, for instance, if I'm communicating and delivering a diagnosis to someone with scarring alopecia. I've got to be honest about the potential for regrowth being somewhat limited, given the fact that they've already lost follicles. With the alopecia areata patients, I once again, “Sorry for you, I'm a New Yorker. I'm going to give it to you straight.” For some people, this is a very mild condition. You have a little stress. You lose a patch of hair. We do a little intervention. The patch comes back. And it's not an issue again for a few years, right? But for some people, this is a really progressive condition that's going to require all hands on deck to try to treat, so fasten your seatbelt. But, again, I'll use a little bit of humor to lighten the mood when I communicate. 

I've also spent a lot of time thinking about things like health literacy. You know, what the patient is able to understand. What their knowledge level is walking in the door. And so, one of the things that I've decided over the years is that, of course, you're the same doctor, right, all through the day. But, to be your best, to provide the best care to each of your patients, sometimes you have to tailor your message up or down based on the person who's in front of you, right? So, at the University of Chicago, we have a really diverse, very cool patient population. And so, in the same morning, I might see one person who's a university professor who has brought the recent research studies that they have questions about, right? And then, the very next patient might be a farmer from Indiana, right? Whose level of engagement with the literature is very different than my university professor. And so, I feel it's important to be able to develop—to be able to deliver the same message to people with very different levels of health literacy. 

So, again, the goal at the end of this patient-centered communication is to be able to engage the patient, to encourage them, right? Based on how you communicate, to allow them to take ownership and responsibility of their health. And I think that's not just an alopecia areata or an alopecia patient issue. This is an issue throughout our practice as dermatologists, as physicians, as health care providers. 

But I think it's particularly important for our alopecia areata patients, right? You all know this, our alopecia patients tend to have very high emotional needs because of the impact of alopecia on their self-esteem, right? Many of these patients come to us with a sense of shame, with emotional isolation. You know, they have—their self-image is really impacted by their disease. Alopecia patients come to us with a lack of accurate information, right? And sometimes that's just, not even—how many times have you had a patient come to you, you go through the visit, and they're like, “So, wait. I have alopecia?” You know? And, once again, I often will joke, and I'll say, “You know, dear heart, if you made an appointment with me, the question isn't if you have the alopecia; the question is what type? And I'm here to help sort out why you're having hair loss.” 

Some patients, honest to goodness, don't even realize that alopecia is just an umbrella term, and we have to drill down on the diagnosis. This is alopecia areata, right? Patients, along the lines of lack of accurate information—like, how many of your patients come to you quoting their favorite Instagram influencer, right? Who, might be another patient, right? Who might be someone who just made themselves an expert, you know? And then, you have to—and they have trusted relationships, right, with these influencers. And you have to undo some of the knowledge. And you're the newcomer, right? So, you have to—even though in your mind, “Listen, I'm a total dermatologist. I know what I'm doing.” Right? You have to sometimes build enough trust to undo the misinformation that patients are really holding to because they saw it on Instagram, so it must be true. 

Also, what's really interesting, particularly with our alopecia areata patients and other alopecia patients as well, is that as we start to outline a treatment plan, patients have—there's always, we have to consider the kind of risk versus benefit of any treatment. And what that analysis looks like varies from patient to patient, right? Because for some people, having the alopecia be visible is something that's devastating. But I also have patients who have tremendous involvement over much of their scalp, but who have a different perspective on this. Maybe they've been through other health issues, and this isn't the biggest health crisis they're facing. Maybe they come from a culture where women, particularly, can wear short, very short hair and feel comfortable. Or where men can rock baldies and look great. And so, they have lower tolerance for risk for medication, right? Because they're more comfortable with their hair loss, right? There are people for whom it's devastating. There are people for whom it's a bit of news and they keep it moving. So, we have to really respect where the patient's coming from and where this puts them emotionally. 

It's also really important that we focus on communication with our alopecia areata patients because right now we don't have a cure for this condition, right? So, these are patients who are likely to need us at different points along their journey. And for some people, that's every now and again. And for some people who have rapidly progressive disease or slowly progressive disease, we want them to feel comfortable returning to us when they need us, right? And so, again, it's important that they have a good experience. That we earn their trust so that they will adhere to the treatment plan and also return when they need us. 

So, let's take a few minutes to think about what are some of the barriers to effective communication with alopecia areata patients? Well, I think one of the biggest time constraints for all of us is just time. Wouldn't it be lovely to have all the time in the world to listen to everything our patients want us to hear, to answer all of their questions in a way that never feels rushed? Well, we still want to give the patient that experience, but we’ve got 10 to 15 minutes to get it done, right? And so, that's something that we have to work around. And I'll give you my tips for that in a few minutes. 

Again, we've talked a little bit already about health literacy. But, some of our patients are—have already made themselves pros at understanding the literature. And some of our patients really struggle with understanding concepts like autoimmune disease, right? And so—and patients get overwhelmed, right? When you—they come to you. You give them a diagnosis. You try to explain a little bit about it. You try to give them treatment options. It's a lot to take in. And so, we have to really look at the barrier that that patient's literacy might be creating. 

There are the emotional barriers. These patients are coming to us, afraid of what we're going to tell them, anxious about their hair loss, sometimes depressed. Sidebar: important to do some screening for anxiety or depression among these patients so that we make sure that if they need treatment, we can steer them in that direction, right? And sometimes, people feel intimidated or embarrassed, right? To ask questions of us or to voice concerns. And so, you really want to pay attention to those clues. 

Now, there are other barriers that are very general. Things like language differences, right? And I think most of us know that we need to have access to interpreter services for that kind of thing. You know, pay attention to things like physical barriers. If someone has a vision impairment, for instance, you want to make sure that you put the after-visit summary in a large enough font that they'll be able to read the information you're communicating. That kind of thing. 

And you also want to assess for technological barriers, right? I work on the south side of Chicago. Not everybody has access to—although, things are better. But not everyone has access to telehealth or electronic communications. And so if we're doing all our communication through MyChart messages, right, sometimes people aren't getting that information. So, you want to really understand how you're going to be able to reach your patients and what kind of technology barriers they might be facing. 

And then, of course, as it pertains to hair, we all—especially, I mean, this is an issue for all of our patient interactions. But we are often taking care of patients from different cultural backgrounds from our own, as physicians or other practitioners. And, honestly, this is part of the joy of medicine, right? Is being able to take care of everybody. Sometimes, that requires learning from our patients, right? If they have a different background. And feeling open to asking them questions. But also, respecting differences. And, again, this is particularly important when it comes to talking about hair and hair care with patients with hair loss. So, for instance, we want to respect that there are cultures where hair has really a huge cultural significance, sometimes even a spiritual significance, right? People will sometimes point to biblical references to the hair being the crowning glory. And what does it mean if I'm losing my hair, you know? So, we want to be really sensitive to that. 

We want to think about the fact that people with curly hair, for instance, might have very different hair care practices than people with straight hair. So, if you have a patient with highly textured hair—and this is often Black patients, for instance—someone might tell you, “You know, I only shampoo every 2 weeks.” As opposed to someone with straight hair who might shampoo twice a week, right? Or for someone who keeps their hair in braided styles, they might shampoo once a month. Now, you might personally disagree with that, but it's really important that you not look surprised when someone tells you that. Because that's going to immediately decrease their confidence in your ability to care for them. 

So, I think it's really important that we take—give some thought, really, to what our own perspectives are, what our culture tells us about hair. But also, you know, think about some of the cultural differences that we might have from our patients, and be open to asking questions and learning. 

Another example that comes to mind is just the ritual of hair care. So, for instance, in some cultures, in Indian cultures—I learned this from many of my patients—in Black culture, use of oils, for instance, is very common. Sometimes on the scalp, sometimes on the hair. We want to ask about those things. For—again, in Black culture, for instance, the bonding that takes place between a parent and a child over the hours that go into a wash day, right? Or a session of braiding one's child's hair and the bonding that takes place there is really very special and almost sacred. So, again, just be really open to understanding people from other cultures and the role that hair and hair care play so that you can understand the impact of the hair loss on your individual person.