|Year : 2020 | Volume
| Issue : 5 | Page : 197-204
Cumulative life course impairment of alopecia areata
Laura J Burns1, Natasha Mesinkovska2, Dory Kranz3, Abby Ellison3, Maryanne M Senna4
1 Department of Dermatology, Massachusetts General Hospital, Boston, MA, USA
2 National Alopecia Areata Foundation, San Rafael; Department of Dermatology, University of California Irvine, Irvine, CA, USA
3 National Alopecia Areata Foundation, San Rafael, USA
4 Department of Dermatology, Massachusetts General Hospital; Harvard Medical School, Boston, MA, USA
|Date of Submission||15-Jun-2020|
|Date of Decision||17-Aug-2020|
|Date of Acceptance||29-Jul-2020|
|Date of Web Publication||03-Nov-2020|
Maryanne M Senna
50 Staniford Street, Suite 200, Boston, MA 02114
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Alopecia areata (AA), an unpredictable, nonscarring hair loss, is commonly perceived as a cosmetic, rather than medical, concern. However, substantial evidence exists describing the negative impact on quality of life, as the disease affects patients personally, socially, financially, and physically. Over time, the cumulative disability may perpetuate poor confidence, social disconnection, negative coping strategies, and failure to achieve a full life potential. Here, we describe the cumulative life course impairment (CLCI) of AA by examining the complex interaction of (1) stigmatization, (2) physical and psychiatric comorbidities, and (3) coping strategies. The model aggregates existing cross-sectional data, which have previously captured disease burden only as snapshots in time. Thus, by examining cumulative effects, the CLCI model serves as a proxy for longitudinal data to better describe life course epidemiology of the disease.
Keywords: Alopecia areata, cumulative life course impairment, quality of life
|How to cite this article:|
Burns LJ, Mesinkovska N, Kranz D, Ellison A, Senna MM. Cumulative life course impairment of alopecia areata. Int J Trichol 2020;12:197-204
| Introduction|| |
Despite substantial evidence demonstrating the negative effects on quality of life (QoL), alopecia areata (AA) is commonly considered to be a cosmetic concern by insurers and physicians alike. The Cumulative Life Course Impairment (CLCI) concept aims to characterize the compounding effects of disease resulting in a failure to achieve “full life potential” in some patients. It serves as an alternative to longitudinal data and can aid physicians in identifying high-risk patients to promote early intervention and expand access to treatment.
AA is an inflammatory, nonscarring hair loss, affecting all ages, sexes, and ethnicities. Among the US population, the cumulative lifetime incidence is 2%, with 0.1%–0.2% prevalence in the general population., AA most commonly presents as sudden onset of well-demarcated, asymptomatic, patches of hair loss. Approximately 5% of AA cases will progress to alopecia totalis (AT), a loss of all scalp hair, or alopecia universalis (AU), a loss of all scalp and body hair. Conventionally, patients under 40 years of age are affected, with nearly 50% seeking treatment before the age of 20 years. The condition is notoriously unpredictable, with age at presentation, AA subtype, and duration of hair loss all predictive of prognosis. To date, there is no definitive treatment available.
AA is an autoimmune disease driven by the loss of immune privilege of the anagen hair follicle. Infiltration of autoreactive cytotoxic T-lymphocytes disrupts hair cycling, causing premature entry into the telogen phase. Notably, inflammation is targeted at the hair bulb, sparing the follicular stem cells, and allowing for potential re-growth., Recently, upregulation of the Janus kinase (JAK) transcription pathway has been identified in the pathogenesis of AA, with targeted therapies showing promise for treatment.
The physical discomfort of AA is limited, perhaps leading to the common perception that AA is purely a cosmetic condition. However, the negative effects of AA on health-related QoL have been well documented, which are comparable to patients with chronic skin disease such as psoriasis., In fact, the effects are far reaching, not only impacting QoL of individuals with AA, but also their families. Patients' willingness to pay for a cure matches that of patients with vitiligo, with a median value of 13%–22% of monthly income. Even still, the treatment for AA is not viewed as medically necessary by many insurers, and in some cases, physicians. It also remains underfunded by government agencies relative to the estimated disability burden among cutaneous diseases.,,
| Cumulative Life Course Impairment|| |
Stigmatization and cultural perception of hair loss drive social, economic, and emotional burden. Previous studies have sought to evaluate these effects by producing cross-sectional data in the single domains of functioning. However, the full disease impact cannot be fully appreciated through these snapshots alone. Instead, a more complete assessment of disability accounts for the complex series of emotional and physical consequences over a lifetime.
This concept was first proposed by Kimball et al. as the “CLCI.” Through this model, the collective effects of stigmatization, physical and psychological co-morbidities, and coping strategies are compiled. First developed to evaluate psoriasis, the concept has since been applied to several other dermatologic conditions, including vitiligo, atopic dermatitis, epidermolysis bullosa, chronic wounds, acne, hidradenitis suppurativa, melanoma, and nonmelanoma skin cancers.,,,,, It proves a powerful tool to evaluate the conditions causing functional impairment, prominent subjective symptoms, and/or profound psychosocial impairment.
Personal patient accounts serve as compelling narratives but cannot capture implications for the broader patient population. Instead, life course epidemiology would best be assessed with longitudinal data. However, it is rendered largely infeasible by the complexity of required statistical techniques. Alternatively, CLCI serves as a proxy. Here, we apply the core components of the CLCI concept to AA, as outlined in [Table 1], by identifying cross-sectional data within each category of the established model. Thus, we propose a unique view of the cumulative impact of AA and its alterations of life trajectory.
|Table 1: Intrapersonal components of the cumulative life course impairment model applied to alopecia areata|
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| Methods|| |
A search of the PubMed database was conducted in October 2019 using a combination of free text keywords and medical subject headings for the concepts of AA and the way the condition may impact the individual based on the CLCI model. Numerous synonyms for the outcomes of interest were used and can be found in accompanying [Appendix S1]. The results were limited to the English language citations. Publications specific to AA that supported one of the CLCI concepts were included as evidence.
| Physical Co-Morbidities|| |
Physiologically, hair serves as protection from the elements, including sun and air-borne particles. Thus, loss associated with AA leave patients susceptible to sunburn, eye irritation, and allergies. However, the biological function of hair is only a small piece of the larger impact on physical health, as AA is associated with many systemic diseases. The most prevalent association is nail abnormalities, with 46% of pediatric patients and 14%–19% of adults presenting with nail findings such as pitting or trachyonychia.,
Intuitively, AA is strongly associated with other autoimmune conditions. The most common is thyroid disease, which is found in 19% of patients;, however, AA is also reported to be associated with diabetes mellitus, psoriasis, vitiligo, lupus, multiple sclerosis, and rheumatoid arthritis. In addition, patients with AA have an increased risk for atopic diseases, such as atopic dermatitis, allergic rhinitis, and asthma., Interestingly, nutritional deficiencies, including Vitamin D and iron are also more common in AA patients, as are sleep disorders.
| Stigma|| |
Hair is more than “just hair,” as it serves as a symbol of gender, age, beauty, status, values, health, and group membership. In a qualitative survey study conducted by Davey et al., patients report feeling “monstrous or alien,” noting the fact that villains and evil characters, such as Voldemort, Gollum, Nosferatu, are portrayed as bald. They frequently encounter misconceptions of sickness or chemotherapy treatment, with public ostracizing or pity as a result. Patients are even accused of belonging to extremist cults. The stigmatization is compounded by the high visibility and difficulty of concealing the condition. Thus, men and women alike, feel obligated to wear hats, scarves, wigs and make-up or fear being seen in public. The evolving effect is profound, as individuals with AA were found to have higher rates of self-stigmatization than mental health patients.
| Psychological Co-Morbidities|| |
Several mechanisms have been proposed linking stress to the development of AA. For instance, increased corticotropic releasing hormone secretion has been shown to stimulate neurogenic inflammation leading to the collapse of follicular immune privilege. This is demonstrated clinically, as up to 58%–77% of patients report a stressful life event preceding the onset of AA.,, However, the role of stress in the development of AA remains controversial.
While the reciprocal relationship of stress and hair loss remains unclear, data evaluating psychiatric comorbidities associated with AA have been generated by cross-sectional, retrospective, case-controlled, epidemiologic, and survey studies [Table 2], [Table 3], [Table 4]. The results demonstrate the higher rates of depression and anxiety, adjustment disorder, obsessive-compulsive disorder, and alexithymia.,,,,,,,, Patients with AA were found to be at an elevated risk of suicide and intentional self-inflicted injury (odds ratio: 2.84). Mortality risk associated with intentional self-harm is significantly higher in AA patients, with a 2-fold higher risk for young adults with AT or universalis. Disease severity appears to be an important factor, as the number of psychiatric visits in AA patients was increased according to the number of intralesional injection treatments received.
|Table 2: Social and financial-related evidence for cumulative life course impairment|
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|Table 4: Psychiatric co-morbidity related evidence for Cumulative Life Course Impairment|
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| Social and Economic Impact|| |
Perception of stigmatization or overt social rejection has significant effects on self-confidence and self-worth, particularly important given the frequent onset of AA in pediatric patients. Adolescence is a time of internal conflict and pressure to conform. Visible disfigurement at this transitional period can be devastating, leading to social withdrawal. As such, affected children are common targets of bullying, limiting their participation in activities and formation of friendships., With time, the consequences compound, leading to learned social avoidance and fears of rejection. Patients struggle with a restricted life, avoiding activities such as sports, swimming, shopping, and social events. Many make alterations to career and education trajectory, choosing roles with less public visibility., Romantic relationships are broadly affected, with sexual QoL affected in men and women alike, regardless of marital status.
As with many chronic medical conditions, the financial burden to patients and their families can become substantial. Wigs, although helpful tools for concealment, can cost patients several thousands of dollars, with 65% of patients reporting worry about affording replacements. Medical costs, associated with treatment of AA, as well as comorbid conditions, are often a source of stress for patients and families, with 29% reporting perceived financial difficulties. JAK inhibitors, although demonstrating efficacy in AU and AT, are currently prescribed off label and rarely covered by insurance or pharmaceutical financial assistance programs. Out-of-pocket costs near $5000 per month.
| Coping|| |
Coping is a key moderating component of CLCI caused by physical, psychological, social, financial, and stigmatizing factors. Even a small disease burden can result in significant impairment when ineffective coping strategies are coupled with limited social support. Personality traits can also combat disease burden. However, like coping techniques, these are shaped throughout development, often during or after AA onset.
Maladaptive coping strategies can further perpetuate the CLCI. It is not uncommon for patients first experiencing an episode of AA to blame themselves or fate. Intropunitive measures are taken, such as stopping social occasions, wearing fashionable clothes, or looking in the mirror. Intuitively, avoidant coping and less active emotional coping were associated with high rates of QoL impairment. Some coping mechanisms, while beneficial in the short term, may have delayed detrimental consequences. Patients with first onset of AA were found to feel less burdened when adopting an attitude of regrowth. However, with time, 43% of patients report their treatments as ineffective, leading to a sense of less personal control and stronger illness identity, both found to be predictive of greater QoL impairment.
Conversely, some patients cultivate adaptive coping mechanisms, such as humor, support-seeking, or acceptance. Practical coping, such as with scarves and wigs, can improve self-esteem and adaptability. One study reports 87% of patients using a wig to socialize. Unfortunately, this too can be a source of anxiety, as 43% felt that wigs could negatively affect their confidence in social situations, due to fears of being “found out.” Perhaps, one of the strongest coping mechanisms reported by AA patients is acceptance,,, often developed only after many years of AA and attempting multiple treatment modalities.
Adopting the abstract concept of a “coping reservoir,” one can imagine a steady depletion from the daily struggles of AA. This is true even in the absence of active disease, as the patients often live with worry given the unpredictable relapsing nature of the condition. As such, their ability to navigate social, familial, or personal problems is impaired compared to the general population. Fortunately, resources exist for patients, including relaxation techniques, yoga, and mindfulness, which have recently gained traction., Support groups and social media can be powerful resources for patients and their family members., The National Alopecia Areata Foundation serves to educate, advocate, and connect patients, offering tools to overcome the physical and emotional challenges.
| Discussion|| |
The negative effects of dermatologic disease on QoL have been well recognized, as is the case for AA. However, QoL, by nature, is cross-sectional, representing the symptomatic, emotional, and social impact of AA only at a given snapshot in time. By comparison, the concept of life course impairment, characterizes the consequences of chronic diseases accumulated over a lifetime. It captures the impact on life milestones, relationships, health, and finances – assessing how a disease can limit the possibility of patients living life to their full potential.
Demonstrated here, AA affects patients in nearly every facet of life. Patient specific life-trajectory is variable; however, the CLCI concept can support physicians in better understanding and identifying patients at increased vulnerability. This information can inform early intervention to prevent the progression of life course impairment, by screening for physical comorbidities (i.e., thyroid function testing and Vitamin levels), connecting patients to behavioral/psychiatric health resources, or establishing contact with support groups. In addition, the CLCI model further combats the belief that AA is a cosmetic, rather than medical, concern. This tool demonstrates the multifactorial dimensions of the disease and highlights the importance of improved treatment options and standardized insurance coverage. It also further characterizes the global burden of disease for improved prioritization of health care resources.
Further, longitudinal research is required to better establish how to define and measure the cumulative life course impact. CLCI instruments and surveys are being developed, with hopes of standardization across institutions and cultures., Regardless of how it is defined, the overarching goal of the CLCI and other epidemiologic studies is the same: to identify the patients at risk and promote early assistance from health-care providers, payment agencies, and social support groups to minimize long-term impact.
Financial support and sponsorship
This project was in part funded by a National Alopecia Areata Foundation medical student research award.
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]