National Alopecia Areata Foundation Research Articles

Evaluating the sources and types of dietary and nutritional advice for patients with alopecia areata.

Although there are now two Food and Drug Administration (FDA)-approved treatments for severe alopecia areata (AA), many patients still resort to non-medical therapies and lifestyle modifications such as diet and nutrition. The goal of this study was to evaluate the sources and types of dietary and nutritional advice for patients with AA. We distributed a cross-sectional national survey using the National Alopecia Areata Foundation's email list-serv between August 2022 and January 2023. Most respondents were White (76.3%), employed (58.3%) females (84.4%) with a mean age of 52 years. 163 (19.1%) respondents reported receiving diet and/or nutritional advice and 418 (49.5%) respondents reported searching for diet and/or nutritional advice to help with their AA; the most common source of advice was online. The most common dietary changes were the use of vitamins or supplements (30.6%), adherence to diets (23.2%), and the addition of specific foods (21.4%). 209 (50.2%) respondents reported no change in their disease and 197 (47.4%) respondents reported no change in how they felt about their disease compared to before they tried the change. Many AA patients search for or receive unsolicited dietary and nutritional advice and subsequently modify their behavior to manage their disease. However, the efficacy of these changes is unclear. Providers should be mindful of the sources through which patients obtain treatment information as well as the lifestyle changes patients make to counsel patients with evidence-based information. Further investigation is needed to better characterize the direct and indirect costs of dietary and nutritional modification in the treatment of AA.

Real-world experience quantifying access to JAK inhibitor care for alopecia areata patients: a patient-centered survey study.

Janus kinase inhibitor (JAKi) therapy has revolutionized the treatment landscape for alopecia areata (AA); however, access may be limited by a lack of insurance coverage and high out-of-pocket costs. We aimed to evaluate real-world patient experiences regarding access to JAKi therapy. We conducted an online patient-centered survey using the National Alopecia Areata Foundation listserv. In total 784 individuals initiated our survey, and 600 completed it in full (76.5%). While more non-White patients considered obtaining JAKi therapy, more White patients reported the use of this medication class. In total, 74.2% lacked insurance coverage or had partial coverage for JAKi, and 52% expressed dissatisfaction with available coverage. However, 52.9% reported delays in starting medication due to insurance approval processes, contributing to worsened AA and related stress. In total, 35% of patients did not try to obtain JAKi therapy due to concerns about costs, and 18.2% discontinued therapy due to financial barriers. Also, 19.8% of patients reported utilizing financial savings to pay for medication, and 55.2% reported using a copay assistance card. Further, 12.2% reported forgoing other necessities to pay for AA expenses. Our results are limited by the subjective nature of survey studies. The recency of FDA approval for JAKi therapy may also influence patients' perceptions of access to care. Patients with AA face significant barriers when trying to obtain JAKi therapy, and existing racial inequities may be exacerbated by these barriers. Further advocacy work is needed to improve access to care.

Online psychological support for patients with alopecia areata: an evaluation of available online psychological support material based on the National Centre for Complementary and Integrated Health guidelines.

Alopecia areata (AA) is an autoimmune condition causing nonscarring hair loss, which is associated with significant psychological comorbidity. We evaluated the range and quality of the online resources available for patients with AA, using the National Centre for Complementary and Integrated Health (NCCIH) criteria. The resources of highest quality were Alopecia UK, National Alopecia Areata Foundation, and Health Talk. The results of this evaluation highlight the importance of signposting patients to specific online resources for psychological support with their condition.

Post-Traumatic Stress Disorder in Patients with Alopecia Areata: A Survey Study in the USA

Introduction: Alopecia areata (AA) is an autoimmune condition that results in nonscarring hair loss. AA is comorbid with mental health disorders including anxiety and depression. This study aimed to evaluate the presence of post-traumatic stress disorder (PTSD) in relation to hair loss in patients with AA. Methods: A cross-sectional national survey was distributed using the National Alopecia Areata Foundation’s (NAAF) email list. This study was approved by the Mass General Brigham Institutional Review Board. Participants were asked to complete the PTSD Checklist for the DSM-5 (PCL-5), a validated screening tool for PTSD in the context of their AA. Results: Of the 1,449 completed surveys (completion rate 79.6%), most respondents were female (83.8%) and white (76.6%) with an average age of 50.6 ± 15.6 years. Respondents had AA for an average of 17.7 ± 15.8 years, with 91.4% experiencing current active hair loss. A total of 33.9% of respondents screened positively for PTSD, with an average score of 48.8 ± 12.3 on the PCL-5 in participants who screened positively. Participants with alopecia totalis have the highest average PCL-5 score of 30.1 ± 19.2, followed by participants with alopecia universalis with an average score of 26.0 ± 19.9, and lastly patchy AA with an average score of 24.5 ± 18.3 (p = 0.003). Feelings of intrusion and avoidance were the predominant reported symptoms. Total PTSD scores were significantly higher in respondents who were younger and identified as Black or African American and Hispanic when compared to white and non-Hispanic respondents, respectively. Conclusion: These findings identify that one in 3 patients with AA in this cohort meet the screening criteria for PTSD specifically relating to their hair loss experience. These results further highlight the mental health comorbidities associated with AA and emphasize that these symptoms may persist even after hair regrowth. Limitations include the nonrandomized NAAF population with most participants being white females. Future studies should confirm these findings in other patient populations. Finally, respondent’s baseline mental health was not assessed; therefore, a causal relationship between AA and PTSD cannot be deduced.

The Invisible Impact of a Visible Disease: Psychosocial Impact of Alopecia Areata.

The physical impact of alopecia areata (AA) is visible, but the psychological and social consequences and emotional burden are often underrecognized. In this cross-sectional study, 547 participants recruited via the National Alopecia Areata Foundation completed a survey encompassing demographics; AA illness characteristics; and five patient-reported outcome measures on anxiety and depression, perceived stress, psychological illness impact, stigma, and quality of life (QoL). Differences in disease severity subgroups were assessed via analysis of variance (ANOVA) and t tests. Mean age was 44.6years, and 76.6% were female. Participants with more severe hair loss tended to report longer duration of experiencing AA symptoms (P < 0.001). Overall, participants reported negative psychological impact, emotional burden, and poor QoL due to AA. Participants with 21-49% or 50-94% scalp hair loss reported greater psychological impact and poorer QoL than those with 95-100% scalp hair loss (most parameters P < 0.05). Similar results were observed for eyebrow/eyelash involvement subgroups. These results suggest that participants with AA experience emotional burden, negative self-perception, and stigma, but the impact of AA is not dependent solely on the amount of hair loss. Lower impact among participants with 95-100% scalp hair loss may indicate that they have adapted to living with AA.

Experiencing Workplace Bullying in Patients with Alopecia Areata: A Cross-Sectional Survey Study

Introduction: Alopecia areata (AA) is an immune-mediated hair loss condition with substantial psychosocial impact. The impact of AA on social interactions at work has not been established. Methods: We administered the Negative Acts Questionnaire-Revised Scale to the National Alopecia Areata Foundation database to evaluate workplace bullying in patients with AA. Results: Ultimately, 673/1,120 individuals who met inclusion criteria completed the survey. Most respondents were female (n = 537, 79.8%), Caucasian (n = 508, 75.5%), with an average age of 46.8 ± 14, and employed full-time (n = 427, 63.4%). Our results demonstrate 21.7% (n = 146) of respondents experienced workplace bullying. Participants most frequently faced having their opinions ignored (53.8%, n = 362), being excluded (47.7%, n = 321), and having gossip spread about them (44.0%, n = 296). Notably, 75.0% (n = 120/160) of individuals who self-reported bullying addressed the behavior; however, 30.8% of participants noted the bully continued (30.8%, n = 37). Stress associated with filing a complaint (43.5%, n = 293) and effect on future career options (36.1%, n = 243) were common barriers to report bullying. Conclusion: This study expands our understanding of the psychosocial impact of AA by confirming individuals with AA experience workplace bullying. Stigma against patients may play a role in this phenomenon. Future work is warranted to identify strategies to reduce bullying against patients with AA.

Patterns of insurance coverage for wigs in patients with alopecia areata: a cross-sectional survey.

Patterns of insurance coverage for wigs in patients with alopecia areata: a cross-sectional survey.

Assessing Patient’s Values When Selecting Treatments for Alopecia Areata: A Cross-Sectional Survey Study

Introduction: Alopecia areata (AA) is an autoimmune condition that results in nonscarring hair loss. There is currently only one Food and Drug Administration (FDA)-approved treatment for AA; as a result, a wide range of treatments are commonly administered. This study aimed to determine how patients with AA prioritize treatment characteristics when choosing a therapy. Methods: A cross-sectional national survey was distributed using the National Alopecia Areata Foundation’s (NAAF) email list. This study was approved by the Mass General Brigham Institutional Review Board. Participants were asked to rank the importance of five treatment domains. Results: Of the 1,074 completed surveys (completion rate 77.4%), most respondents were female (85.4%) and white (77.8%) with an average age of 49.3 ± 15.4 years. Respondents had AA for an average of 17.7 ± 15.4 years, with 90.0% experiencing current active hair loss. 95.6% of respondents considered the treatment’s ability to achieve hair regrowth as important, 93.9% listed the availability of information about the treatment (e.g., via doctor or online) as important, 89.1% ranked the treatment side effects as important, 75.7% the cost, and 68.0% the convenience of use. A sub-analysis was performed examining responses between respondents who identify as white versus nonwhite, which showed that while the order of importance was the same between groups, a significantly larger proportion of nonwhite respondents attributed higher importance to cost (white: 73.8%, nonwhite: 82.4%; p = 0.006) and convenience (white: 65.3%, nonwhite: 77.3%; p < 0.001) than their white counterparts. Discussion/Conclusion: These findings identify key domains that can serve as a starting point in shared decision-making between patients and physicians. This knowledge can streamline dermatologist delivery of key information and highlight areas of improvement for future therapeutics. Limitations include the nonrandomized NAAF population with most participants being white females. Future studies should confirm these findings in other patient populations.

32725 The need for, development and initial validation of the Scale of Alopecia Areata Distress, a brief survey to assess alopecia areata patient-reported psychosocial outcomes

Losing one’s hair doesn’t usually physically ‘hurt’; it’s the psychological and social consequences of the hair loss which often are most painful. To be deemed effective by patients, clinicians, and payers approving coverage for treatments, any new alopecia areata (AA) treatment needs to address, and help reduce, this psychosocial disease burden. To demonstrate such treatment benefit, a psychometrically validated scale of AA psychosocial Patient Reported Outcomes (PRO) is required. Currently, no such scale is publicly known to exist (Dory Kranz, former CEO of the National Alopecia Areata Foundation [NAAF], personal communication, January 9, 2020).

LB957 Post-traumatic stress disorder in patients with alopecia areata

Post-Traumatic Stress Disorder (PTSD) occurs secondary to exposure to a traumatic event. Alopecia areata (AA) is an autoimmune condition causing unpredictable hair loss. Disorders such as anxiety and depression are comorbid with AA,1 and lack of highly efficacious treatment options can be distressing.2 This cross-sectional survey study examines the prevalence of PTSD among patients with AA. The PTSD Checklist for DSM-5 was distributed through the National Alopecia Areata Foundation.3 1449 completed surveys (rate 79.6%); most respondents were female (83.8%) and white (76.6%), with 91.4% experiencing active hair loss.

The Relationship Between Patient-Reported Severity of Hair Loss and Health-Related Quality of Life and Treatment Patterns Among Patients with Alopecia Areata.

IntroductionAlopecia areata (AA) is an autoimmune disease characterized by hair loss. Patients with AA experience a range of social and emotional impacts, and the lack of effective treatments and multiple affected locations can deepen the burden of illness. The objective of the current study was to assess health-related quality of life (HRQL) among patients with AA, and to evaluate the relationship between patient-reported AA severity, HRQL and treatment patterns.MethodsA web survey was completed by participants recruited through the National Alopecia Areata Foundation. The survey included questions on disease characteristics, burden and impact (evaluated by the Skindex-16 for AA and items on work/school and sexual relationships), healthcare utilization and treatment experience. Analyses were conducted for the overall sample and by key subgroups, including AA severity and disease duration.ResultsA total of 1327 participants with AA completed the survey. The mean age was 39.7 [standard deviation (SD) 12.3] years and 58.4% were female. On average, participants had experienced signs and symptoms of AA for 11.5 years (SD 12.5) and were diagnosed by a healthcare provider (HCP) 10.5 (SD 12.2) years ago. Participants reported a range of severity of current scalp hair loss, including 0% (2.6%), 1–20% (39.8%), 21–49% (26.2%), 50–94% (10.2%) and 95–100% (21.3%). Participants reporting 95–100% of scalp hair missing were less likely to be currently seeing an HCP and to currently be on treatments for AA. There was a non-linear relationship between HRQL and current AA severity. Participants with 1–20% to 50–94% of current scalp hair missing reported higher symptom, functioning and emotional impacts due to AA than participants with 0% missing scalp hair and/or 95–100% missing scalp hair. Similar findings were observed for current eyebrow and eyelash severity, except for emotional impacts.ConclusionSeverity of AA plays an important role in understanding the burden of illness and healthcare patterns of people living with AA.Supplementary InformationThe online version contains supplementary material available at 10.1007/s13555-022-00702-4.

Cannabis Use among Patients with Alopecia Areata: A Cross-Sectional Survey Study.

Importance:Little is known about cannabis use among patients with alopecia areata (AA). These patients often experience significant psychosocial burden and may seek alternative therapies beyond that of traditional medical treatments, such as cannabis.Objective:To characterize cannabis use among patients with AA.Design:This was a cross-sectional study conducted from March 9, 2021, to March 22, 2021, using a web-based survey distributed to adult patients with AA using the National AA Foundation's email listserv and social media platforms.Results:1,087 participants completed the survey (completion rate: 88.1%). Most participants were female (n = 870, 83.3%) and Caucasian (n = 771, 73.8%), with a mean age of 47.6 ± 15.5 years. 65.9% (n = 689) of participants with AA had a history of cannabis use and among those, 51.8% (n = 357) were current cannabis users. The most common reason for cannabis use among current users was for AA-related symptoms (n = 199, 55.7%), with the greatest perceived improvement in symptoms of stress (n = 261, 73.1%) and anxiety, sadness, and depression (n = 234, 65.6%). 80.4% (n = 287) indicated that cannabis had no impact on their hair loss.Conclusion:Cannabis use is common among patients with AA and is often used to alleviate the psychosocial symptoms related to AA, despite the lack of perceived improvement in hair regrowth.

28620 The impact of the COVID-19 pandemic on perceived hair loss and stress in a cohort of alopecia areata patients: A cross-sectional study

Alopecia areata (AA) results in nonscarring hair loss ranging from scalp to full body involvement. Studies have demonstrated increased occurrence of stress-related cutaneous disorders with COVID-19; however, no studies have explored COVID-19–related stress and disease perception among AA patients.This study examines perceived hair loss and stress (scale of 0-100) related to the COVID-19 pandemic stratified by AA subtype. Of 740 respondents from the National Alopecia Areata Foundation and Massachusetts General Hospital hair loss clinic, 672 (90.8%) completed surveys and were included.

The Role of Patients in Alopecia Areata Endpoint Development: Understanding Physical Signs and Symptoms.

Meaningful patient input to understand disease experience and patient expectations for improvement with treatment is essential for the selection and development of outcome measures for alopecia areata (AA) clinical trials. This study explored the physical signs and symptoms of AA through 30 semistructured interviews with adult (n= 25) and adolescent (n= 5) patients experienced with severe or very severe AA. Scalp hair loss was overwhelmingly the most important sign and symptom of AA. Nearly all patients (90%) considered scalp hair loss in their top three most bothersome physical signs and symptoms of AA, with 77% (n= 23) naming scalp hair loss as the most bothersome symptom. Other identified signs and symptoms in the top three most bothersome included eyebrow, eyelash, nose, body, and facial hair loss, as well as eye irritation and nail damage and/or appearance. Eyebrow (16%, n= 4), eyelash (4%, n= 1), nasal (4%, n= 1), and body (4%, n= 1) hair loss were identified by seven adult patients as the most bothersome signs and symptoms of AA. Conceptual saturation confirmed that a comprehensive understanding of this patient population's physical AA-related signs and symptoms was obtained. These findings indicate that the primary objective for new AA treatments for this patient population should be meaningful improvement in scalp hair growth to address the most troubling unmet need.

Report from the International Dermatology Outcome Measures Initiative.

The International Dermatology Outcome Measures is a nonprofit organization dedicated to developing evidence-based, patient-centered outcome measures for dermatologic conditions. At the 2018 Alopecia Areata Research Summit, Dr Gottlieb, President of the International Dermatology Outcome Measures, presented an overview of their work in psoriasis, hidradenitis suppurativa, acne, and eczema and discussed the potential areas of mutual interest with the National Alopecia Areata Foundation. Herein, we present a summary of the topics discussed.

Forging the Future: 2018 Alopecia Areata Research Summit Summary Report.

Alopecia areata (AA) is a common autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body that affects over 146 million people worldwide at some point in their lives. Founded in 1981, the National AA Foundation (NAAF) is a nonprofit organization that supports research to find a cure or acceptable treatment for AA, supports those with the disease, and educates the public about AA. NAAF conducts research summits every two years to review progress and create new directions in its funded and promoted research. This report from the seventh AA Research Summit, Forging the Future, held December 4-5, 2018 in New York City provides highlights of the research presented and future research priorities identified during targeted discussion sessions.

Burden of Illness in Alopecia Areata: A Cross-Sectional Online Survey Study.

Previous QOL and disease burden studies have not captured all relevant aspects of living with alopecia areata (AA). To better understand the burden and everyday experience of living with moderate-to-severe AA, a cross-sectional, online, quantitative-qualitative survey was developed to assess symptoms, relationships, productivity, treatments, and financial burden. Adult patients were recruited from the National Alopecia Areata Foundation database. Data were analyzed descriptively. A total of 216 patients completed the survey. Most were female (83%), aged ≥45 years (59%), and white (78%). Nearly 2 of 3 respondents (62%) made different major life decisions (regarding relationships, education, or career) owing to AA. Most respondents (85%) stated coping with AA as a daily challenge, citing mental health issues, concealing hair loss, and others' reactions; 47% reported anxiety and/or depression. Many patients (75%) persistently concealed hair loss (mean time spent, 10.3 h/wk). Treatment discontinuation was common owing to lack of efficacy, side effects, and cost. Associated expenditures included buying wigs or hairpieces and psychotherapy (mean ∼$2,000/y each). Survey respondents comprised a self-selected sample, which may not reflect the entire population. The impact of AA extends beyond cosmetic concerns and carries a considerable psychosocial burden. Efficacious, less burdensome AA treatments are needed to regrow hair and alleviate psychosocial sequelae.

Familial implications of autoimmune disease: Recurrence risks of alopecia areata and associated conditions in first-degree relatives.

Alopecia areata (AA), a complex autoimmune hair loss condition, affects approximately 2.1% of the population. Individuals with AA have increased susceptibility to diseases such as atopy and autoimmune disorders, but little is known about first-degree relatives' risk to develop AA and associated conditions. Genetic counseling for multifactorial conditions, including autoimmune disease is complex, but potentially valuable. Anecdotally we know patients with AA ask medical providers about recurrence risk for family members as well as question whether they and their relatives are at risk for other conditions. Data on AA recurrence risks and comorbid conditions among relatives of affected individuals comprise valuable information that may guide clinical management by genetic counselors. This study investigated the recurrence risk of AA and compared the prevalence of associated conditions among first-degree relatives to the general population. The study also assessed the validity of self-reported conditions for a subset of participants. Relatives of individuals with AA (N=155), recruited from the National Alopecia Areata Foundation Registry, completed telephone surveys about their personal medical history for 70 medical conditions associated with AA. Medical records for 60 participants were compared to self-reported responses. One-sided proportional tests, in which it is assumed the disease prevalence in first-degree relatives is higher than for those in the general population, yielded a 7.8% estimated risk of AA versus the general population prevalence of 2.1%. Furthermore, there are increased risks of 33 associated conditions, including atopy and other autoimmune conditions. Comparison of medical reports to self-reported conditions indicated only 12% was incongruent. The findings may help genetic counselors better serve patients and their families by informing them of lifetime risk estimates of developing AA and comorbid conditions, resulting in early diagnosis of autoimmune diseases in AA families. Findings also provide evidence supporting the validity of self-report data in AA families.

PO124 To AssesS the Correlation Between Severity of Coronary Artery Disease and Periodontitis

Alopecia areata (AA) is a common autoimmune skin disease that results in the loss of hair on the scalp and elsewhere on the body and affects over 146 million people worldwide at some point in their lives. Founded in 1981, the National Alopecia Areata Foundation is a nonprofit organization that supports research to find a cure or acceptable treatment for AA, supports those with the disease, and educates the public about AA. The National Alopecia Areata Foundation conducts research summits every 2 years to review progress and create new directions in its funded and promoted research. The Foundation brings together scientists from all disciplines to get a broad and varied perspective. These AA research summits are part of the Foundation’s main strategic initiative, the AA Treatment Development Program, to enhance the understanding of AA and accelerate progress toward a viable treatment.

The Impact of Alopecia Areata on Sexual Quality of Life.

Background:Alopecia areata (AA) is an autoimmune disease characterized by patches of hair loss that can cause decreased quality of life. This study evaluates the sexual quality of life for patients with AA.Methods:We surveyed patients in the National Alopecia Areata Foundation patient registry using an online version of the validated Sexual Quality of Life for Females (SQOL-F) and Sexual Quality of Life for Males (SQOL-M) questionnaires.Main Outcome Measures:Patient sexual quality of life was measured using the SQOL-F and SQOL-M instruments.Results:Eighty-one participants with AA (64 females and 17 males) completed the surveys. The mean age was 39.7 ± 13.8 years for women and 37.4 ± 9.9 years for men. Women had a decreased sexual quality of life with mean SQOL-F score of 51.3 ± 22.9. Men had a decreased sexual quality of life with mean SQOL-M score of 62.7 ± 33.9 (higher scores indicate greater sexual quality of life). No statistical difference was found between these two cohorts (P = 0.12). In discussing negative aspects of their sexuality, women strongly identified with emotional statements such as “I feel embarrassed” (n = 48, 75.0%) while men strongly identified with emotional statements such as “I feel anxious” (n = 7, 46.7%). Both cohorts strongly identified with “I feel like I have lost something” (n = 48, 76.2% and n = 7, 43.8%, respectively).Conclusions:This study demonstrates that AA has a negative impact on the patient's sexual quality of life.