Abstract
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.
Introduction
Post-traumatic stress disorder (PTSD) occurs after exposure to a traumatic event and is characterized by intrusive symptoms, avoidance of stimuli, marked and negative changes in mood, and cognitions associated with the trauma [1]. In dermatology, PTSD has been documented in patients as a result of Stevens-Johnson syndrome and blistering diseases [2, 3].
Alopecia areata (AA) is an autoimmune condition resulting in hair loss that occurs spontaneously, sporadically, and unpredictably. Mental health disorders such as anxiety and depression are comorbid with AA, and a lack of highly efficacious treatment options in conjunction with its variable course can be distressing [4‒6]. For patients with AA, common events such as an itchy scalp or normal hair shedding on a pillow can trigger a concern for relapse or progression and lead to considerable psychological morbidity. While AA’s psychiatric comorbidities have been well established, there is a gap in evaluation of secondary psychological morbidity. This study aims to combat this gap and examine the prevalence of PTSD in relation to hair loss among patients with AA.
Materials and Methods
A cross-sectional national survey was distributed using the National Alopecia Areata Foundation’s (NAAF) email list from 12/17/2021 to 1/31/2022. Surveys were distributed with anonymous links using Qualtrics (Qualtrics LLC, Provo, UT, USA). This study was approved by the Mass General Brigham Institutional Review Board, approval number 2019P003852, and informed consent was obtained from all survey participants. The PTSD Checklist for DSM-5 (PCL-5), a 20-item validated patient-reported screening tool for PTSD, was administered [7]. Participants were prompted to answer the PCL-5 in the context of their AA. Participants were given lists of problems that people have in response to hair loss, and they were asked to indicate how bothered they were by each problem using a five-point Likert scale. The full survey instrument is available in online supplement 1 (see online suppl. material at https://doi.org/10.1159/000530356).
The participant selection of the categories “moderately,” “quite a bit,” and “extremely” were used to determine respondents’ overall most predominant problems. Continuous variables were summarized using averages and standard deviations and categorical variables were summarized using counts and percentages. χ2 tests were employed to test associations. Linear regression analysis using total PTSD score as the outcome and age, sex, race, ethnicity, and employment status as explanatory variables was performed. All analyses were performed using JASP version 0.14.1 and two-sided p values <0.05 were deemed statistically significant.
Results
Baseline Characteristics
Of the 1,843 patients, 1449 completed surveys were ultimately included for analysis (completion rate 79.6%, Fig. 1). Most respondents were female (n = 1,214, 83.8%) and white (n = 1,110, 76.6%). Respondents had AA for an average of 17.7 ± 15.8 years, with the majority (n = 1,325, 91.4%) experiencing current active hair loss. The alopecia types of respondents included 540 with patchy AA (37.3%), 185 with alopecia totalis (AT) (12.8%), and 724 with alopecia universalis (AU) (50.0%) at some point in their disease history (Table 1).
Baseline characteristics of the study respondents
| Total (n) | 1,149 |
| Age, mean (SD) | 50.6 (15.6) |
| Gender, n (%) | |
| Male | 231 (15.9) |
| Female | 1,214 (83.8) |
| Prefer not to answer | 4 (0.3) |
| Employment status | |
| Employed | 901 (62.2) |
| Unemployed | 179 (12.4) |
| Retired | 327 (22.6) |
| Prefer not to answer | 41 (2.8) |
| Race | |
| Caucasian | 1,110 (76.6) |
| African American | 189 (13.0) |
| Asian | 64 (4.4) |
| Native Hawaiian or Pacific Islander | 5 (0.4) |
| American Indian or Alaska Native | 8 (0.6) |
| Other | 73 (5.0) |
| Ethnicity | |
| Hispanic/Latino | 139 (9.6) |
| Not Hispanic/Latino | 1,310 (90.4) |
| AA subtype | |
| Patchy AA | 540 (37.3) |
| AT | 185 (12.8) |
| AU | 724 (50.0) |
| Current active AA | 1,325 (91.4) |
| Years with AA, mean (SD) | 17.7 (15.8) |
| Total (n) | 1,149 |
| Age, mean (SD) | 50.6 (15.6) |
| Gender, n (%) | |
| Male | 231 (15.9) |
| Female | 1,214 (83.8) |
| Prefer not to answer | 4 (0.3) |
| Employment status | |
| Employed | 901 (62.2) |
| Unemployed | 179 (12.4) |
| Retired | 327 (22.6) |
| Prefer not to answer | 41 (2.8) |
| Race | |
| Caucasian | 1,110 (76.6) |
| African American | 189 (13.0) |
| Asian | 64 (4.4) |
| Native Hawaiian or Pacific Islander | 5 (0.4) |
| American Indian or Alaska Native | 8 (0.6) |
| Other | 73 (5.0) |
| Ethnicity | |
| Hispanic/Latino | 139 (9.6) |
| Not Hispanic/Latino | 1,310 (90.4) |
| AA subtype | |
| Patchy AA | 540 (37.3) |
| AT | 185 (12.8) |
| AU | 724 (50.0) |
| Current active AA | 1,325 (91.4) |
| Years with AA, mean (SD) | 17.7 (15.8) |
PTSD and Alopecia Areata
A total of 33.9% (491 of 1,449) screened positively for PTSD indicated by a PCL-5 score greater than 33, with an average score of 48.8 ± 12.3 on the PCL-5 for those who screened positively (Table 2). Feelings of intrusion (cluster B) and avoidance (cluster C) were predominant symptoms. Participants with AT had the highest average PCL-5 score and the highest percentage of PTSD, followed by AU and patchy AA.
AA characteristics and PCL-5 score by disease type
| AA (n = 540) | AT (n = 185) | AU (n = 724) | Total (n = 1,449) | Significance | |
|---|---|---|---|---|---|
| AA disease specifics per disease type | |||||
| Years with AA, mean (SD) | 12.1 (12.5) | 16.7 (15.2) | 22.2 (16.8) | 17.7 (15.8) | p < 0.001 |
| Current active hair loss, n/N (%) | 488/540 (90.4) | 169/185 (91.4) | 688/724 (95.0) | 1,325/1,449 (91.4) | p = 0.491 |
| Hair regrowth, n/N (%) | 83/239 (34.7) | 102/170 (60.0) | 257/724 (35.5) | 442/1,133 (39.0) | p < 0.001 |
| Hair loss lasting >6 months, n/N (%) | 206/311 (66.2) | 139/174 (79.9) | 542/640 (84.7) | 887/1,125 (78.8) | p < 0.001 |
| PCL-5 overall scores per disease type | |||||
| PCL-5 score, mean (SD) | 24.5 (18.3) | 30.1 (19.2) | 26.0 (19.9) | 26.0 (19.3) | p = 0.003 |
| PCL-5 score ≥33, n/N (%) | 166/540 (30.7) | 80/185 (43.2) | 245/724 (33.8) | 491/1,449 (33.9) | p = 0.008 |
| PCL cluster scores per disease type | |||||
| Intrusion (B), mean (SD) | 1.4 (1.4) | 1.6 (1.4) | 1.3 (1.4) | 1.4 (1.4) | p < 0.001 |
| Proportion of answers ranging from “moderately” to “extremely” (B), % | 39.7 | 46.7 | 36.8 | 39.1 | p < 0.001 |
| Avoidance (C), mean (SD) | 1.5 (1.4) | 1.8 (1.4) | 1.6 (1.5) | 1.6 (1.4) | p = 0.007 |
| Proportion of answers ranging from “moderately” to “extremely” (C), % | 44.1 | 52.7 | 44.8 | 45.5 | p = 0.011 |
| Cognition and mood (D), mean (SD) | 1.2 (1.3) | 1.6 (1.5) | 1.4 (1.4) | 1.4 (1.4) | p < 0.001 |
| Proportion of answers ranging from “moderately” to “extremely” (D), % | 35.1 | 46.3 | 39.6 | 38.8 | p < 0.001 |
| Arousal and reactivity (E), mean (SD) | 1.0 (1.3) | 1.2 (1.3) | 1.1 (1.3) | 1.1 (1.3) | p < 0.001 |
| Proportion of answers ranging from “moderately” to “extremely” (E), % | 28 | 35.3 | 32.1 | 31 | p < 0.001 |
| AA (n = 540) | AT (n = 185) | AU (n = 724) | Total (n = 1,449) | Significance | |
|---|---|---|---|---|---|
| AA disease specifics per disease type | |||||
| Years with AA, mean (SD) | 12.1 (12.5) | 16.7 (15.2) | 22.2 (16.8) | 17.7 (15.8) | p < 0.001 |
| Current active hair loss, n/N (%) | 488/540 (90.4) | 169/185 (91.4) | 688/724 (95.0) | 1,325/1,449 (91.4) | p = 0.491 |
| Hair regrowth, n/N (%) | 83/239 (34.7) | 102/170 (60.0) | 257/724 (35.5) | 442/1,133 (39.0) | p < 0.001 |
| Hair loss lasting >6 months, n/N (%) | 206/311 (66.2) | 139/174 (79.9) | 542/640 (84.7) | 887/1,125 (78.8) | p < 0.001 |
| PCL-5 overall scores per disease type | |||||
| PCL-5 score, mean (SD) | 24.5 (18.3) | 30.1 (19.2) | 26.0 (19.9) | 26.0 (19.3) | p = 0.003 |
| PCL-5 score ≥33, n/N (%) | 166/540 (30.7) | 80/185 (43.2) | 245/724 (33.8) | 491/1,449 (33.9) | p = 0.008 |
| PCL cluster scores per disease type | |||||
| Intrusion (B), mean (SD) | 1.4 (1.4) | 1.6 (1.4) | 1.3 (1.4) | 1.4 (1.4) | p < 0.001 |
| Proportion of answers ranging from “moderately” to “extremely” (B), % | 39.7 | 46.7 | 36.8 | 39.1 | p < 0.001 |
| Avoidance (C), mean (SD) | 1.5 (1.4) | 1.8 (1.4) | 1.6 (1.5) | 1.6 (1.4) | p = 0.007 |
| Proportion of answers ranging from “moderately” to “extremely” (C), % | 44.1 | 52.7 | 44.8 | 45.5 | p = 0.011 |
| Cognition and mood (D), mean (SD) | 1.2 (1.3) | 1.6 (1.5) | 1.4 (1.4) | 1.4 (1.4) | p < 0.001 |
| Proportion of answers ranging from “moderately” to “extremely” (D), % | 35.1 | 46.3 | 39.6 | 38.8 | p < 0.001 |
| Arousal and reactivity (E), mean (SD) | 1.0 (1.3) | 1.2 (1.3) | 1.1 (1.3) | 1.1 (1.3) | p < 0.001 |
| Proportion of answers ranging from “moderately” to “extremely” (E), % | 28 | 35.3 | 32.1 | 31 | p < 0.001 |
AA, alopecia areata; AT, alopecia totalis; AU, alopecia universalis.
PTSD and Patient Demographics
The total PTSD score was impacted by age, sex, race, ethnicity, and employment status. Younger age resulted in significantly higher PTSD scores with mean change in PTSD score per year increase in age of −0.20 (95% CI: ‒0.278 to −0.113, p < 0.001). Respondents who identified as Black or African American scored on average 3.31 points higher than white or Caucasian respondents (95% CI: 0.379–6.231, p = 0.027). Hispanic respondents on average scored 5.51 points higher than non-Hispanic respondents (95% CI: 1.965–9.057, p = 0.002) (online supplement 2).
Discussion
Our results reflect that one in 3 patients with AA in this cohort meet the screening criteria for PTSD that is specifically stemming from their alopecia. The AT group had a higher percentage of PTSD when compared to the AU and AA groups. Similarly, there was significantly more hair regrowth in the AT group (60%) compared to the patchy AA (34.7%) and AU (35.5%) groups. Increased rate of regrowth and conceivably heightened concerns of disease relapse may contribute to the increased reported psychological symptoms in the AT group.
Respondents who were younger and identified as Black or Hispanic had significantly higher PTSD scores when compared with their older, white, and non-Hispanic counterparts, respectively. The younger age is not surprising as there is an association with bullying and other appearance-related skin conditions [8]. Additionally, the race and ethnicity results indicate that groups that have been historically marginalized have higher PTSD scores than their counterparts showing that these results are multifactorial and affected by context.
These results add to the growing literature about the psychological effects of AA. Patient suffering and disease-related morbidity can continue even after clinical treatment success is achieved with regrowth of hair. Increased emphasis on durable treatments that maintain hair growth, instead of reactionary treatments such as steroid injection in response to new patches of hair loss, may be of benefit to patients. Until that time, dermatologists can better support their AA patients by informing them of the possibility of PTSD, validating those with symptoms, and having a low threshold for referral to mental health services for psychological support.
These results of this study should be considered within the parameters of the study design. Generalizability is limited by the utilization of the NAAF database and because most respondents were white females. Additionally, there was no information gathered on the respondent’s mental health; therefore, a causal relationship between AA and PTSD cannot be deduced. Further studies are needed to replicate these findings and understand the underlying reason for differential experience between groups.
Statement of Ethics
This study was approved by the Mass General Brigham Institutional Review Board (approval # 2019P003852). Informed consent was obtained from all participants; however, this study was exempt from obtaining informed written consent by the Mass General Brigham Institutional Review Board.
Conflict of Interest Statement
Lara Drake, BA, Sara J. Li, BS, Sophia Reyes-Hadsall, BS, and Karen Lee, BS: no conflicts of interest to share. Kathie Huang, MD: Dr. Huang has received royalty payments for licensing of the ALTO, BETA, and BELA tools, participated in clinical trials related to alopecia from Incyte, Lilly, Concert, and Aclaris, and received consulting fees from Concert and Pfizer. Arash Mostaghimi, MD, MPA, MPH: Dr. Mostaghimi has received royalty payments from Pfizer for licensing of the ALTO, BELA, and BETA tools and has participated in clinical trials related to alopecia from Incyte, Lilly, Concert, and Aclaris. In addition, Dr. Mostaghimi has received consulting fees from Pfizer, Concert, Lilly, AbbVie, hims and hers, Digital Diagnostics, and Bioniz.
Funding Sources
No funding was obtained for this study.
Author Contributions
Lara Drake, Sara J. Li, Sophia Reyes-Hadsall, and Karen Lee: conception of study design, acquisition, analysis, and interpretation of the data, and drafting and revision of the manuscript. Kathie Huang and Arash Mostaghimi: conception of study design, interpretation of the data, and drafting and revision of the manuscript. All authors have given final approval of the manuscript version to be published. All authors agree to be accountable for all aspects of the work.
Additional Information
Lara Drake and Sara J. Li contributed equally to this work.Kathie Huang and Arash Mostaghimi should both be considered corresponding authors.
Data Availability Statement
All data generated or analyzed during this study are included in this article. Further inquiries can be directed to the corresponding author.
