It is All Alopecia Areata: It is Time to Abandon the Terms Alopecia Totalis and Alopecia Universalis

To the Editor: There is confusion regarding the classification of alopecia areata (AA). In the article “Development of the alopecia areata scale for clinical use: results of an academic-industry collaborative effort,”1King B.A. Mesinkovska N.A. Craiglow B. et al.Development of the alopecia areata scale for clinical use: results of an academic-industry collaborative effort.J Am Acad Dermatol. 2021; https://doi.org/10.1016/j.jaad.2021.08.043Abstract Full Text Full Text PDF Scopus (24) Google Scholar it is evident that even experts in AA disagree on the definitions of alopecia totalis (AT) and alopecia universalis (AU). When asked to define AT, 21 alopecia experts gave answers ranging from “≥80% loss of hair on the scalp (with or without facial hair loss)” to “100% scalp hair loss” (Table I). For AU, answers ranged from “Any involvement beyond the scalp even if just a small lesion” to “100 percent hair loss―not a hair anywhere.”Table IDefinitions of alopecia totalis and alopecia universalis provided by 21 alopecia areata experts (from the article “Development of the alopecia areata scale for clinical use: results of an academic-industry collaborative effort,” [supplementary material]1King B.A. Mesinkovska N.A. Craiglow B. et al.Development of the alopecia areata scale for clinical use: results of an academic-industry collaborative effort.J Am Acad Dermatol. 2021; https://doi.org/10.1016/j.jaad.2021.08.043Abstract Full Text Full Text PDF Scopus (24) Google Scholar)ResponderAlopecia totalisAlopecia universalis1Total loss of terminal hair on the scalpTotal loss of terminal hair on the scalp and at least 98% of terminal hair loss on the face and body2Anyone who has total (or they can have a few wisps of hair) alopecia on the scalp. What is more confusing is “universalis”This is more confusing. I use this term if there is a fair amount beyond the scalp AND totalis (eg, facial hair loss in particular)3Complete or almost complete loss of scalp hairComplete or almost complete loss of scalp hair, eyelashes, eyebrows, and body hair4Do not use this termDo not use this term5Do not use this termDo not use this term6100% scalp hair loss. If it is slightly less, something like 90% or more, I will describe it as nearly totalis or effectively totalis100% scalp and body hair loss. If someone has partial body hair loss, I may use the term AT/AU7SALT score of 90%Any involvement beyond the scalp even if just a small lesion8If someone has ≥80% loss of hair on the scalp (with or without facial hair loss) I consider that to be alopecia totalisIf someone has complete hair loss of the scalp with complete hair loss of at least 3 other body areas (arms, legs, and face, for example)999% scalp involvementAll hair gone all over10Complete scalp hair loss. A few remaining strands of hair would still qualify as AT. 95%-100% SALT scoreComplete or almost complete scalp and body hair loss11>90%-95% scalp hair lossNear complete involvement of scalp, facial, and body hair loss12No scalp hairComplete hair loss from head to toe14Involvement of majority of the scalp, usually >90%. Sometimes will use if patient is rapidly progressing at first visit and I know they will get to totalis in a few weeks because of positive hair pull testInvolvement of majority of scalp >90% and some involvement of eyebrows and eyelashes (usually all of them). These patients usually have little hair on body but may have hormonally driven hair in the groin or axilla15Complete loss of scalp, brow, lash lossComplete loss of hair on scalp, face, and body16All scalp hair loss100 percent hair loss―not a hair anywhere17Complete scalp hair loss. I will use the term “nearly AT” when a patient has just about all scalp hair lost with maybe one or 2 small patches of hair remainingComplete loss of all scalp, facial, and body hair. I use term “nearly AU” when nearly all of the hair is gone in these locations with few patches of hair remaining18Complete (or near complete) loss of scalp hair. SALT score > 90%Loss of all or nearly all of scalp, face, and body hair. If they have a few patches of hair on their legs, part of an eyebrow, a few small patches on head―it is still AU20I prefer the term alopecia areata totalis. Complete scalp hair lossI prefer alopecia areata universalis. No scalp or body hair21Total loss of scalp hairAll hair or nearly all the hair on the entire body is lostAT, Alopecia totalis; AU, alopecia universalis; SALT, Severity of Alopecia Tool. Open table in a new tab AT, Alopecia totalis; AU, alopecia universalis; SALT, Severity of Alopecia Tool. If experts in AA offer such disparate definitions of commonly used terminology, then there has been and will continue to be widespread miscommunication, the implications of which are profound. For instance, the epidemiology of AA, in particular the prevalence of patchy AA, AT and AU, is uncertain when we realize that definitions of these terms are so variable among authors. Similarly uncertain are the results of studies reporting risk factors, comorbidities, and treatment responses of patients with patchy AA versus AT versus AU. How can we effectively communicate when we decide, individually—not collectively—what words mean? The answer is, quite simply, we cannot. Effective communication requires that we understand what somebody else is saying, that is we know the intended meaning of their words. When definitions of common terminology are variable, we cannot effectively communicate and knowledge is challenged. Beyond these things, inaccurate classification of a patient's disease could impact their access to therapy, and a trivial issue of “semantics” means patients do not get access to treatment that is intended for them. Fortunately, there are ways to avoid these issues. The answer to this problem of inaccurate terminology is to abandon the terms AT and AU and instead report the amount of scalp hair loss, either specifically―using, for example, the Severity of Alopecia Tool score2Olsen E.A. Hordinsky M.K. Price V.H. et al.Alopecia areata investigational assessment guidelines—part II. National Alopecia Areata Foundation.J Am Acad Dermatol. 2004; 51: 440-447https://doi.org/10.1016/j.jaad.2003.09.032Abstract Full Text Full Text PDF PubMed Google Scholar―or in ranges―using, for example, the Alopecia Areata Investigator Global Assessment3Wyrwich K.W. Kitchen H. Knight S. et al.The alopecia areata investigator global assessment scale: a measure for evaluating clinically meaningful success in clinical trials.Br J Dermatol. 2020; 183: 702-709https://doi.org/10.1111/bjd.18883Crossref PubMed Scopus (37) Google Scholar―with further modification for other body hair involvement.4Wambier C.G. King B.A. Rethinking the classification of alopecia areata.J Am Acad Dermatol. 2019; 80: e45https://doi.org/10.1016/j.jaad.2018.08.059Abstract Full Text Full Text PDF PubMed Scopus (12) Google Scholar Indeed, the Alopecia Areata Scale1King B.A. Mesinkovska N.A. Craiglow B. et al.Development of the alopecia areata scale for clinical use: results of an academic-industry collaborative effort.J Am Acad Dermatol. 2021; https://doi.org/10.1016/j.jaad.2021.08.043Abstract Full Text Full Text PDF Scopus (24) Google Scholar takes the latter approach, detailing clinically and functionally meaningful ranges of scalp hair loss that can be modified per other important features. Creating a clear, objective clinical classification of AA is possible. Such classification is crucial, not only for effectively and accurately communicating among ourselves but also presenting research findings and discoveries. Determining appropriate treatment for individual patients will also rely on clear, objective clinical classification. At the precipice of the future, let us recognize the limitations of the past and update the way we think about, talk about, and write about AA. Dr King reports serving on advisory boards and/or is a consultant and/or is a clinical trial investigator for AbbVie, Aclaris Therapeutics Inc, AltruBio Inc, Almirall, Arena Pharmaceuticals, Bioniz Therapeutics, Bristol-Meyers Squibb, Concert Pharmaceuticals Inc, Dermavant Sciences Inc, Eli Lilly and Company, Incyte Corp, LEO Pharma, Otsuka/Visterra Inc, Pfizer Inc, Regeneron, Sanofi Genzyme, TWi Biotechnology Inc, and Viela Bio; he is on speaker bureaus for Pfizer Inc, Regeneron, and Sanofi Genzyme. Dr Craiglow has received honoraria and/or fees from Aclaris Therapeutics Inc, Arena Pharmaceuticals, Pfizer, and Sanofi Genzyme; she has served on speaker bureaus for Eli Lilly, Pfizer, Regeneron, and Sanofi Genzyme. Dr Senna reports working as a consultant and/or advisor for Concert, Pfizer, Deciphera, Eli Lilly and Company, Arena, and Cassiopea and is a clinical trial investigator for Eli Lilly and Company, Concert, and Follica. She has received research funds from Concert, Eli Lilly and Company, Follica, and Clarity and speaker honoraria from Concert, Pfizer, and Eli Lilly and Company. Dr Ko is a consultant and/or investigator for Eli Lilly and Company, Arena, Pfizer, and Concert. Dr Mesinkovska serves as Chief Scientific Officer for the National Alopecia Areata Foundation and has received honoraria for advisory boards for Arena Pharmaceuticals, Concert Pharmaceuticals, Eli Lilly and Company, and Nutrafol. Dr Peterson has no conflicts of interest to declare. Development of the alopecia areata scale for clinical use: Results of an academic–industry collaborative effortJournal of the American Academy of DermatologyVol. 86Issue 2PreviewThe current classification for alopecia areata (AA) does not provide a consistent assessment of disease severity. Full-Text PDF Open Access