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BACKGROUND: Alopecia areata (AA) is an immune-mediated form of hair loss that can occur at any age, often with a significant mental health burden. OBJECTIVES: We aimed to provide estimates of the lifetime incidence of AA, and the impacts on mental health, healthcare utilisation and work-related outcomes, assessing variation across major sociodemographic subgroups. METHODS: AA cases were identified in primary care from the UK population-based Oxford-Royal College of General Practitioners Research and Surveillance Centre database (2009-2018). Lifetime incidence of AA was estimated at age 80 using modified time-to-event models with age as the timescale, overall and stratified by sex, ethnicity, deprivation, and geography. Mental health, healthcare utilisation and work-related outcomes were assessed in the two years after AA diagnosis compared to matched unaffected controls, and stratified by the same sociodemographic subgroups . RESULTS: 6,961 people developed AA during the study period. Overall lifetime incidence of AA was 2.11% (95% Confidence Interval [CI] 2.06, 2.16%). Females had a higher lifetime incidence 2.35% (95%CI 2.28, 2.43%) than males 1.88% (95%CI 1.81, 1.94%). Lifetime incidence was higher in those of Asian ethnicity 5.87% (95%CI 5.51, 6.24), other 4.47% (95%CI 3.63, 5.31), mixed 4.44% (95%CI 3.50, 5.37) and black 3.03% (95%CI 2.63, 3.42) ethnicity, compared to white ethnicity 1.74% (95%CI 1.68, 1.80). Lifetime incidence was highest in those with the greatest deprivation; most-deprived quintile 2.92% (95%CI 2.77, 3.07%) compared to least-deprived 1.68% (95%CI 1.59, 1.78%). Across sociodemographic subgroups, people with AA of black ethnicity were most likely to have anxiety (adjusted Odds Ratio versus matched controls 2.92, 95%CI 1.71, 4.91), and had the greatest risk of time off work (adjusted Hazard Ratio versus matched controls 2.54, 95%CI 1.80, 3.56). CONCLUSIONS: AA affects around 1 in 50 people over their lifetime. Incidence and the impact of AA on mental health and work outcomes, is highest in ethnic groups other than white. Clinicians should be aware of the marked heterogeneity in the incidence and impact of AA, and support targeted healthcare to groups at the highest risk of alopecia and its consequences.The study protocol for this retrospective observational study was registered with ClinicalTrials.gov (Identifier: NCT05727306).
RESUMO
Background: Alopecia areata (AA) can have a significant impact on wellbeing. Consequently, individuals with AA often seek treatments or products to promote hair regrowth or camouflage their hair loss that incur a financial cost to the individual. Objectives: The current study aimed to examine the direct financial burden of AA to understand the wider impact of the condition and the factors which influence spending on products and services. Methods: A total of 829 United Kingdom based participants completed an online survey. Demographic and condition-specific data were collected, alongside spending on AA-related products and services. Participants were asked about their use of products and services, the associated costs, how they financed these costs, and their household income to determine what percentage of income they spent on products and services. Results: Participants predominantly identified as female (85.9%), white (92.7%) with a mean age of 42.7 years and a median AA duration of 10.94 years. Female gender, Asian ethnicity, lower income, and worse AA symptoms predicted higher spend from income. Wigs were the most common product used and incurred the greatest cost (median £700). The highest cost for men was private dermatology services (median = £550). On average people spent 3% of their disposable income (prior to housing costs) on AA-related products and services. Conclusions: This study outlines the risk factors associated with higher financial burden from managing AA which require consideration by health providers, commissioners, and policy makers when designing services to support the wellbeing of people living with AA.
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Importance: Current measures of alopecia areata (AA) severity, such as the Severity of Alopecia Tool score, do not adequately capture overall disease impact. Objective: To explore factors associated with AA severity beyond scalp hair loss, and to support the development of the Alopecia Areata Severity and Morbidity Index (ASAMI). Evidence Review: A total of 74 hair and scalp disorder specialists from multiple continents were invited to participate in an eDelphi project consisting of 3 survey rounds. The first 2 sessions took place via a text-based web application following the Delphi study design. The final round took place virtually among participants via video conferencing software on April 30, 2022. Findings: Of all invited experts, 64 completed the first survey round (global representation: Africa [4.7%], Asia [9.4%], Australia [14.1%], Europe [43.8%], North America [23.4%], and South America [4.7%]; health care setting: public [20.3%], private [28.1%], and both [51.6%]). A total of 58 specialists completed the second round, and 42 participated in the final video conference meeting. Overall, consensus was achieved in 96 of 107 questions. Several factors, independent of the Severity of Alopecia Tool score, were identified as potentially worsening AA severity outcomes. These factors included a disease duration of 12 months or more, 3 or more relapses, inadequate response to topical or systemic treatments, rapid disease progression, difficulty in cosmetically concealing hair loss, facial hair involvement (eyebrows, eyelashes, and/or beard), nail involvement, impaired quality of life, and a history of anxiety, depression, or suicidal ideation due to or exacerbated by AA. Consensus was reached that the Alopecia Areata Investigator Global Assessment scale adequately classified the severity of scalp hair loss. Conclusions and Relevance: This eDelphi survey study, with consensus among global experts, identified various determinants of AA severity, encompassing not only scalp hair loss but also other outcomes. These findings are expected to facilitate the development of a multicomponent severity tool that endeavors to competently measure disease impact. The findings are also anticipated to aid in identifying candidates for current and emerging systemic treatments. Future research must incorporate the perspectives of patients and the public to assign weight to the domains recognized in this project as associated with AA severity.