Patient perspectives of the cumulative life course impairment of alopecia areata

Alopecia areata (AA) is an unpredictable form of inflammatory hair loss often viewed as a cosmetic condition, rather than a medical disease.1, 2 This perception prevails despite substantial evidence illustrating the negative effects of AA on quality of life and its associated psychological, social and financial burdens. The Cumulative Life Course Impairment (CLCI) model is a relatively new approach to characterizing these compounding disease effects. First proposed by Kimball et al. in 2010, the CLCI concept serves as a proxy for longitudinal data and aims to describe why some patients fail to achieve their ‘full life potential’.3 Previously, cross‐sectional data were compiled to describe the culmination of stigmatization, physical and psychological comorbidities, social and economic implications, and coping strategies in AA (Fig. 1).4 As a supplement, we interviewed four patients with moderate to severe AA. Each patient case is briefly summarized below and aligned with the CLCI model and current literature in Table S1. By exploring the CLCI through the patient lens, we hope to capture what many practitioners understand intuitively – that the effects of AA are broad and often long‐lasting. We aim to reinforce the importance of the model as a potential tool in identifying at‐risk patients, promoting early intervention and expanding access to medically necessary treatments. Components of the Cumulative Life Course Impairment (CLCI) model applied to alopecia areata (AA). Patient 1 was a 29‐year‐old woman with abrupt onset of alopecia universalis (AU) following a severe allergic reaction at 26 years of age. She was successfully treated with oral Janus kinase (JAK) inhibitors, which was fortunately covered by a pharmaceutical patient assistant programme. The unpredictability of AA and her fears of returning depression, anxiety and suicidal ideation have prevented her discontinuation of the medication in order to conceive, given the uncertain safety profile of this drug in pregnancy. The patient’s story is told in our related article.5 Patient 2 was a 14‐year‐old boy who developed patchy AA at the age of 12 years, and the condition abruptly progressed to alopecia totalis with concurrent facial vitiligo during high school. The patient’s medical insurance denied coverage for nearly all treatments other than corticosteroids and his family is burdened by medical costs, which they pay in instalments. Once an outgoing athlete, the patient became socially withdrawn, enduring bullying, quitting sports teams and staying behind a grade in high school. Patient 3 first experienced AA at the age of 19 years, which progressed to 90% scalp hair loss. As a high schooler, he felt stripped of his identity, bound to glasses and hats for camouflage. He was fearful of social situations where he could not hide his hair loss, avoiding pools, beaches and sports. He has remained unresponsive to JAK inhibitors, which were procured from Canada to decrease out‐of‐pocket costs. Patient 4 was 4 years old when her mother noticed patches of hair loss. The condition resumed when the patient was in middle school, and progressed to AU when she was in college. Now a successful physician, the patient has learned to embrace AA as part of her identity, frequently encountering the misperception that she does not struggle with her hair loss. Despite the patient’s strong coping skills, the disease continues to bring curious looks, hurtful comments about her appearance and worry about any future children inheriting an autoimmune disease. Patient experiences with AA are highly variable, individualized and challenging to characterize with traditional cross‐sectional studies and surveys. These case reports illustrate the broad effects of AA based on severity, timing, access to treatments, financial resources and social support. All of the patients interviewed believe that their lives would have followed a different course if they had never been affected by AA. Our hope is these narratives, in combination with the CLCI model, demonstrate that regardless of current quality of life assessment, AA has the potential to positively and negatively alter overall life trajectory. This project was partly funded by a National Alopecia Areata Foundation medical student research award. Conflict of interest: the authors declare that they have no conflicts of interest. Linked article: Burns LJ et al. Alopecia universalis: a patient’s perspective of the cumulative life course impairment. Clin Exp Dermatol 2021. Tab S1. Experiences described in patient narratives supported by cross‐sectional evidence of the Cumulative Life Course Impairment (CLCI) model.

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