Video
Author(s):
Neil Minkoff; Natasha Mesinkovska, MD; and Brett King, MD, PhD discuss the diagnosis and disease assessment in alopecia areata along with clinical considerations.
Neil Minkoff, MD: One of the things, I think, is a phrase that we have learned a lot about, and we need to learn more about for a lot of different conditions, the whole concept of the patient journey, how a patient finds their way to a treating clinician, and beyond that. You have both touched on the chronic nature of the condition and the desire to work with a patient over time. How do you work with a patient to define what success is for them? What are the outcomes that you are looking to measure, and how do those vary on a patient-by-patient basis? Natasha, I could ask you to weigh in on that to start.
Natasha Mesinkovska, MD: Classically, I think most of our success measurement was really based on how much hair we can grow back. As we have all been doing this, we developed all these tools. One of the tools is called the Severity of Alopecia Tool, or SALT. You will hear people saying “SALT this, SALT that,” and it’s just telling you how much hair has gone. As we have advanced in understanding the condition, we have understood that you can grow a lot of hair, but if your hair loss is right in front, where everybody can see you, or you do not have your eyebrows, you are still not going to be happy. As we have come to understand the necessity to incorporate the patient satisfaction scores, I think now, in any kind of clinical trial or any study we do outside of clinics is really to try to understand the patient component in addition to things that grow the hair. We look at things when the hair grows back as measures of success. If the hair grows back, but for example, it is not the same hair the person had before they lost it. Say you had these beautiful brown locks, and they are now growing as this wispy gray-white hair. Is that success? The patient is not happy, so is that really a successful treatment? Or you grow the hair, but it starts shedding; it is this thing that a lot of people call the chase. You grow 1 spot and then it falls out [somewhere else], so you are lingering at a better score, but is it really a success because you still have to do a lot of things and you never really have a finish line? Day to day, in clinics, we do try to incorporate the area that is involved; we always talk about and discuss the loss of eyebrows and eyelashes. We are yet to understand the importance of the loss of nasal hairs. Does that have to do with the significance of activity? For example, for the past couple of years, my students and I have spent time counting hairs in cadavers, and during COVID-19, trying to probe in people’s noses to see what a normal number of hairs look like and how patients with alopecia have it. Does it matter if they have allergies or not? Just little by little, we are trying to really figure out what else this hair care has, the psychosocial impact.
Neil Minkoff, MD: When you mentioned SALT, I understand that there is the Severity of Alopecia Tool,but there is SALT 1 and SALT 2 [assessments]. Also, we already mentioned, I think Brett had brought up the DLQI [Dermatology Life Quality Index] before as well, in terms of measuring quality of life impact. This is a naive question. Do you actually measure these and follow any of those longitudinally, or are these more research-based tools?
Natasha Mesinkovska, MD: I think, regarding SALT 1, the original SALT has little by little crept into practices by daily practicing clinicians, so it is not necessarily just a clinical tool. SALT 2 is a lot more complicated. You do need to have photographic imaging for that and you need to have the time, which, outside of clinical trials, at least not in my busy practice, not for most of dermatologists and people who provide care for this condition, it is just yet not at the level where it’s really feasible. Hopefully, with AI [artificial intelligence] and technology improving, it may get better. DLQI is always part of every follow-up, and is documented, but I think with long-term patients, they are incorporated but maybe not in the quantified manner that is research worthy, but we do ask those questions. We do note them, I think, in our notes, but maybe not in that succinct manner.
Neil Minkoff, MD: Brett, do you have anything to add to that?
Brett King, MD, PhD: I agree completely with Natasha. The SALT, the Severity of Alopecia Tool, score is simply, and Natasha mentioned this before, just a measure of the amount of scalp hair loss. I often think, and I see these in referral notes, a dermatologist is not necessarily writing, “SALT score 50,” but they will write in their note, “50% scalp hair loss.” Those 2 things are equivalent. I think it is an important piece of documentation, how much hair loss there is. Of note are what other hair-bearing sites are affected—eyebrows, eyelashes, facial hair, and body hair—because altogether, this is going to give a bigger, more detailed picture of severity. Then, in terms of health-related quality of life and instruments to do that, I agree with Natasha. We are documenting these effects on the patients’ quality of life experience, but not necessarily via formal instruments. This last year and a half during COVID-19, I had 5 kids whose families decided to do remote schooling. They had the option to go to school, to be there in person. They decided to be remote because the child could not bear going to school with 50% of their hair missing or with no hair. You document these things, which are obviously incredibly telling of the effect on the patient and their family, but it is not a DLQI score.
Neil Minkoff, MD: Are there any patient-reported outcome tools that you ask patients to be monitoring on their own over the course of therapy, and/or do you think there would be a role for that in terms of longitudinal management, either of you?
Brett King, MD, PhD: Personally, I do not. My answer is no. We do not do that in any other disease state in dermatology, and so I cannot imagine a role for such a thing. Here again, I think when you are making a positive effect on a child or an adult, it is usually abundantly clear, but I do not do it with a tool or think about doing it with a tool. What about you, Natasha?
Natasha Mesinkovska, MD: I do not, but I know that there are certain programs in the country where they are initiating some of these things being captured during visits, and then trying to address that whole psychosocial component with therapists that are adjunct. I think Maria K. Hordinsky, MD, at the University of Minnesota, along with Kristina (Kiki) Gorbatenko-Roth, MD, LP, they have this way to address the daily quality of life, some of the psychosocial impact, and the daily issues with a conjunctive therapist. The outcomes from their pilot were very, very positive. I do not know how we will be able to incorporate this in busy clinics, but I think they are trying to develop some models to lead the future to better incorporate some of this into daily practice.
Transcript edited for clarity.
This video series is being sponsored by Pfizer.