Improving Lives With Alopecia Areata Treatment

In this interview, Dr Arash Mostaghimi explores the psychological impact of alopecia areata (AA) and the importance of achieving meaningful hair regrowth for patients’ quality of life.

The Dermatologist: What specific aspects of health-related quality of life (HRQoL) improve in patients with AA following successful hair regrowth, and how do these findings contribute to our understanding of the disease’s impact on patients’ lives?

Dr Mostaghimi: While all dermatologic diseases can have psychosocial consequences for patients, the impact of AA is largely in the psychosocial realm. So while there are some symptoms associated with it and some consequences for not having your hair, the major deficit for patients with AA is the inability to express themselves and represent themselves to the world in the way they would like to. As a result, you have loss of personal characteristics, particularly for women. Data have demonstrated that there is a stigma against people with alopecia of all types, including AA, where they are seen as being sick, as being ugly, as being lesser. The net consequence of this is it leads to higher rates across all ranges of psychosocial psychiatric diseases.

These patients are more likely to have anxiety. They are more likely to be depressed and withdraw themselves from social connections, from potential intimate relationships to trying to go for a promotion at work—really in every aspect you can imagine that requires putting themselves in front of somebody else. When people regrow their hair, what you see as a clinician is that they almost come back to life in many ways. Students who are out of school, go back to school. Patients may come in and talk to you about a new boyfriend or girlfriend. They may talk about a job they are now applying for. They are going for the promotion, or they are willing to travel to make the pitch that might improve their company. Hair regrowth removes from them the great weight of the disease burden and as a result, they improve across all psychosocial domains. You will see reductions in depression and anxiety, improvements in senses of well-being and fulfillment, better relationships with others, and generally more joy in life.

The Dermatologist: In your experience, what are some common psychosocial challenges faced by patients with AA, and how does the prospect of hair regrowth influence their perception of self-esteem, body image, and social interactions?

Dr Mostaghimi: Each of us has had a day where we go out and we do not look the way we want. There is a phrase for your hair, “having a bad hair day.” Imagine if you had a small stain on your shirt after lunch, how self-conscious you might be or if you went out of the house wearing 2 different shoes, or the wrong belt with your outfit, or anything along those lines. It may be something trivial that only you notice, but it still impacts you and all your interactions. If I were talking to someone and constantly worried about my appearance, it would limit my ability to have the emotional bandwidth to engage with my work, be present, put myself out there, and do all the things that I want to do. Are they looking at my hair? Are they looking at this area that I covered? Are they thinking this about me or thinking that about me?

There are some patients who are bald, and beautiful, and very proud. But for many patients, they experience reduced self-esteem and a low body image, which result in reductions in their social activities and interactions. You can imagine the impact this could have not just with one event, but cumulatively over life. The patient is at work and does not feel comfortable giving a presentation. They do not give presentations, and they worry they will not get promoted in a couple of years. They do not feel comfortable going on dates. They do not ask someone out, and they worry they will not get married or start a family in a couple of years. It is not just isolated in one part of the patient’s life or another, it all builds up together and is cumulative over time.

The Dermatologist: As a dermatologist, how do you approach patient counseling and support regarding the potential for hair regrowth in AA, and what strategies do you employ to address patients’ concerns and expectations regarding treatment outcomes and HRQoL improvements?

Dr Mostaghimi: We have 2 US Food and Drug Administration (FDA)-approved medications for alopecia areata: baricitinib and ritlecitinib. These have been approved over the last 18 months and hopefully we will have more coming down the pike. This is a remarkable sea change in AA; until these drugs came, not only did we not have any FDA-approved medications, but we really did not have many efficacious medicines at all. We were very limited with our options for patients. When I talk about hair growth for AA with the existing medications, I focus on 2 aspects.

First, the idea that these are long-term medications. It takes a while to regrow hair. You must be patient and willing to wait. And it is an organic process. Unlike other inflammatory skin diseases where you can have the diseases resolve rapidly, in AA not only does the inflammation have to go, but the hair must go back into the growth cycle. I describe it as like planting a seed and watering a garden. It takes time for it to come up.

The second thing is that although I am excited by these medications, it is clear, as with all medications, that not every medication works for every person. Some people have an exaggerated and very dramatic response. Other people have a slow response. And there is still a group of people, probably 20% to 30% overall, that just does not have the level of response to get to the outcomes we are looking for. It is important to discuss this, to be honest, to be upfront about it, but not to focus on it because for most patients we can get some improvement even if not completely where they want to be. Although these are the current FDA-approved drugs and they are a major advance, as other medications come with different options and different approaches, it may be that the patient gets better over time or will have other options if these medications do not work out.

Regarding quality-of-life outcomes, part of the core discussion is that, in general, as their hair grows, they will feel better. They will feel more like themselves, and they will look more like themselves. One thing I do caution patients about at the beginning, particularly when their hair regrows partially, is that they may feel worse or have more of a challenge because it is easier to have no hair or all your hair. Sometimes being in the middle can be more complicated. I have had several patients for whom the act of regrowing hair was also psychologically challenging, but it is something that with a strong patient-doctor relationship and partnership you can work through.

The Dermatologist: What implications does your recent study of the results from 2 randomized controlled trials have for the management and treatment of patients with severe AA, particularly concerning the importance of achieving meaningful scalp hair regrowth in improving HRQoL and psychological well-being?

Dr Mostaghimi: In the study, we evaluated baricitinib outcomes. We looked at not just hair regrowth, which is, of course, critical in the primary outcome of the trial, but also depression and psycho-social function scores using a couple of different instruments and how they changed over time. We evaluated patients and put them into 3 buckets: those who did not respond, those who had a 30% increase in their hair, or those whose overall hair loss went down below 20%. For example, if you had hair loss of 80%, but improved to 50%, you would be in the middle group where you had a 30% improvement. That was considered an intermediate outcome. A meaningful outcome was if you got below 20% in the study regardless of where you started.

What we found was reassuring and consistent with what we anticipated finding, which was that those with a Severity of Alopecia Tool score of less than 20, with less than 20% hair loss, had a substantial reduction in their depression and anxiety scores and experienced improved psychosocial functioning overall compared to those who had no growth. This was a stepwise function; if you grew 30% of hair back, it was better than growing no hair back, but was not as good as reaching the clinical outcome of below 20%. And I imagine these results would be even more exaggerated if you went to below 10%, or below 5%, or complete regrowth. Twenty percent is still quite a large amount of your scalp to lose to be considered full and looking like you want to. It also really depends on where the 20% loss is on your scalp. If it is in the front, it can be quite disfiguring even if there is a low percentage there.

The results of these studies demonstrate to us that, yes, improving hair regrowth leads to improvement in not only psychological symptoms, but psychosocial outcomes for our patients and suggest that early and more aggressive treatment of AA may lead to better overall conditions for our patients.

The Dermatologist: What strategies or treatment modalities do you believe hold the most promise for patients with severe AA, particularly for those who have not responded to conventional therapies?

Dr Mostaghimi: When it comes to people who have not responded to conventional therapies or what we have available right now, I think we must do 2 things. We have to look forward and we have to look back. Looking forward is critical so we continue to innovate and bring new drugs to this field, particularly drugs with different mechanisms of action. Janus kinase inhibitors are wonderful medications, but they do not work for everyone. It may be that targeted therapeutics may not only have better efficacy but may also be safer in the long term. However, this is speculative. There is a lot that remains to be seen for those patients.

In addition, although the studies that I mentioned and other studies for these approved medications have been critical, they are all monotherapy trials. These are studies where the only treatment has been the active medication, either baricitinib or ritlecitinib. In real life, we can add other medications to those therapies to come up with a faster and better outcome, such as oral or topical minoxidil, injectable steroids, or any combination of those, which may help push patients to recovery at a faster time point and result in better outcomes than what we see in the trial.

And, finally, when I said looking backwards, there was a long time in which we did not have appropriate treatments for AA. Although it is lovely to regrow hair and make people feel whole, we should not forget the impact of patient advocacy organizations such as the National Alopecia Areata Foundation in providing a community where people can talk to other people like them and be seen and heard. Traditional therapy sessions with a psychologist or psychiatrist, regardless of whether the patient is regrowing hair, can be useful in helping people adjust and adapt to the consequences of their disease.

We should not forget that while regrowing hair is one approach, it does not need to be the only approach. We can make patients feel more secure with wigs and other cosmetic agents that can camouflage the hair loss. Hopefully, we will get to the point where we have a safe and highly accessible medication that regrows everybody’s hair rapidly, but until then, I think we will have to take a combination approach.

Reference

Piraccini BM, Ohyama M, Craiglow B, et al. Scalp hair regrowth is associated with improvements in health-related quality of life and psychological symptoms in patients with severe alopecia areata: results from two randomized controlled trials. J Dermatolog Treat. 2023;34(1):2227299. doi:10.1080/09546634.2023.2227299

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Any views and opinions expressed are those of the author(s) and/or participants and do not necessarily reflect the views, policy, or position of The Dermatologist or HMP Global, their employees, and affiliates.