Summarized by: Sierra Schwierking, BS, MD Candidate, The Ohio State University College of
Medicine, and Stephanie Trovato, MD, Board-Certified Dermatologist, Cleveland Clinic
Scarring alopecia is a disease that causes permanent hair loss. Although there are treatments that
can help to slow the disease and lessen symptoms that patients experience, many patients
continue to face difficulties in managing their condition.
Study Overview
In a 2025 study, researchers surveyed a total of 294 adults with scarring alopecia through the
Scarring Alopecia Foundation (SAF). The survey asked participants what symptoms they had,
what treatments they use or tried, how their mental and emotional health was, and their
experience with newer medications called Janus kinase inhibitors (JAK inhibitors).
Were Patients Satisfied with Their Treatment?
Many of the people surveyed reported ongoing difficulty managing their disease.
Only 38% of respondents stated that they felt their symptoms were well controlled, and only
26% were fully satisfied with their current treatment. Roughly half of participants reported being
only somewhat satisfied with their current treatment. This overall suggests that majority of
patients continue to search for better treatment options than their current treatment plan.
How Does Scarring Alopecia Affect Mental Health?
The survey showed that there was a strong emotional impact from hair loss on participants.
About 79% of participants reported having anxiety or depression specifically related to their
scarring alopecia, and roughly 24% had started psychotherapy or counseling because of their
condition.
These findings show how much scarring alopecia impacts a person beyond just their hair loss as
it can impact confidence, self-image, and overall quality of life.
What Did the Study Find About JAK Inhibitors?
JAK inhibitors are newer types of medications that have shown potential in treating scarring
alopecia.
Within the surveyed participants, 71% had heard of JAK inhibitors, while only 26% had ever
used one before. Patients also reported challenges to getting these medications, such as difficulty
finding a provider to prescribe JAK inhibitors, insurance denials of treatment, and high out-of-
pocket costs. Of the patients who were interested in trying a JAK inhibitor but were unable to get 6/18/26
started on one, the most common reason was finding a healthcare provider comfortable
prescribing the medication.
Does Seeing a Hair Specialist Make a Difference?
Of the participants, those who were treated by dermatologists specializing in hair disorders were
more likely to report better control of their condition and greater satisfaction with their treatment
than those who had been seen by a general dermatologist.
While it is difficult for many to have access to a hair specialist, these findings suggest that seeing
one may play an important role in helping to manage scarring alopecia.
What Does This Mean for Patients?
If you are struggling with scarring alopecia, you are not alone. This survey shows that many
people living with scarring alopecia continue to have difficulty with managing their disease,
satisfaction with treatment, and the emotional toll that hair loss can have. It also shows ongoing
challenges patients may face when trying to access newer treatments, such as JAK inhibitors.
Because this was a survey study done through SAF, the results may not reflect the experiences of
all patients with scarring alopecia. However, the findings show the importance of improving
patient access to care from hair loss specialists, expanding options for treatment, and addressing
the emotional impact that this condition can have.
References
1. Brinks A, Kearney C, Needle C, Pulavarty A, Shapiro J, Lo Sicco KI. Evaluating
Scarring Alopecia Therapies from the Patient Perspective: Knowledge, Barriers to Care,
and Treatment Satisfaction. Skin Appendage Disord. 2025 Jul 24. doi: 10.1159/000547557.