End-stage scarring alopecia (ESSA): Can we get rid of the term?

“End stage” is not always end stage for the patient

Every day I sit and read over pathology reports that arrive to the office. I quickly figure out if the pathologist thinks we’re dealing with a scarring alopecia or a non scarring alopecia. For patients with suspected scarring alopecia, I like to read in the report if all the features of a true scarring alopecia are present such as loss of sebaceous glands.

For time to time, my eye comes across the term ‘end stage’ scarring alopecia in the report. Of all the words in the report, I can confidently say that few words in a biopsy cause more confusion and potential harm to the patient that these two words.

What is meant by the term “end stage”?

We all feel we sort of know what is meant by the term end stage. It doesn’t seem like a positive thing to have for the most part. In medicine, we have terms like end stage kidney disease, end stage liver disease, end stage dementia, end stage heart failure and end stage cancer.

End stage implies that there is some permanency and finality to what is being observed and that there is no returning back to previous states of health. End stage also sometimes implies that what has been done has been done and there may not be much that can be done to alter the situation.

End stage scarring alopecia (ESSA)

The term end stage scarring alopecia is often tacked onto the report when the pathologist sees lots of scarring and little in the way of inflammation. To the pathologist, the finding of ESSA implies that hairs in the biopsy have been destroyed and there is not much left anymore to destroy. In other words, what’s been done has been done- there’s not much that can be done to alter the situation.

End stage may not be end stage to the Patient.

Too often I receive consultations from patients with scarring alopecia who are told they have a biopsy showing “end stage scarring alopecia”. They are told that because they have end stage scarring alopecia there is no need to treat it because it’s pretty much done.

Makes sense?

It would seen to make sense except when I simply ask the patient one question, it seems that something does not quite add up.

MY QUESTION: “Do you think that you have lost more hair in the last 6-12 months?”

PATIENT ANSWER: “For sure. I’ve lost alot more hair”

It would seem strange that a patient end stage disease should have more hair loss. Shouldn’t everything be done? Shouldn’t the inflammatory reaction be done? Shouldn’t the hair loss be done? The answer here is no. By definition a patient with scarring alopecia who is still losing hair has active disease.

The reality of the situation is that there is a big difference between end stage scarring alopecia on a biopsy specimen and end stage in real life. End stage on a biopsy does not necessarily imply that the patient’s disease is inactive. End stage under the microscope does not mean that the patient is not going to lose more hair. End stage does not mean that the patient does not need treatment if he or she wishes to keep what hair they have left. End stage does not mean we discharge the patient from the clinic.

ESSA: Can we do away with the term?

The term end stage is clearly not ideal. It causes some patients to forgo treatment. It gives some patients false hope that their disease is now quiet. It causes some patients to go on to lose more hair that will never come back.

A more appropriate term would simply be ‘advanced scarring alopecia’. I would encourage all pathologists to consider using a phrase like

“The histological findings here support a diagnosis of advanced scarring alopecia. Clininopathological correlation is needed to accurately determine if these histological findings actually imply inactive disease (ie. so called burnt out scarring aloepcia) or whether the patient may in fact have ongoing and progressive hair loss in this or other areas of the scalp.”

For now, I hope that we can do away with the term end stage scarring alopecia.