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

Abstract

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.

Introduction

Alopecia areata (AA) is an autoimmune condition of nonscarring hair loss that affects 0.21% of the US population [1]. Although there is now an approved treatment for severe AA, there are no Food and Drug Administration (FDA)-approved treatments for mild to moderate AA, and a wide range of treatments with limited efficacy and safety data are commonly administered [2]. While many AA patients are unsatisfied with current AA treatments, understanding of what patients find important when selecting a treatment is lacking [3]. This study aimed to determine how patients with AA prioritize treatment characteristics when selecting an AA therapeutic.

Materials and Methods

A cross-sectional national survey was distributed using the National Alopecia Areata Foundation's (NAAF) email list from July 12, 2021, to August 8, 2021. 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 2020P001991, and informed consent was obtained from all survey participants.

Survey instruments were developed with the aim of understanding the importance of different AA treatment domains. The domains were based on the findings of a prior qualitative study from which the five most frequently mentioned treatment domains were chosen for this survey [4]. Domains included were information about treatment (via doctor or online), hair regrowth ability, side effects, cost, and convenience (topical vs. pill vs. injection, frequency, home vs. clinic). Participants were asked to rank the importance of treatment domains independently using a five-point Likert scale. The full survey instrument is available in online supplementary 1 (for all online suppl. material, see www.karger.com/doi/10.1159/000527251).

The categories “extremely important” and “very important” were combined to determine respondents' overall most important treatment domains. 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. 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 1,387 who initiated the survey, those without AA, did not complete the survey, or who were under 18 years of age were excluded. Of the 1,074 included (completion rate 77.4%), most respondents were female (85.4%, n = 917) and white (77.8%, n = 836) with an average age of 49.3 ± 15.4 years. Respondents had a diagnosis of AA for an average of 17.7 ± 15.4 years, with the majority (90.0%, n = 967) experiencing current active hair loss as shown in Table 1.

Table 1.

Respondent demographics and characteristics

	Overall (n = 1,074), n (%)
Completed responses (completion rate)	1,074 (77.4)*
Age, mean (SD), years	49.3 (15.4)
Years with AA, mean (SD)	17.7 (15.4)
History of AT	626 (58.3)
Current active hair loss	967 (90.0)
Sex
Female	917 (85.4)
Male	157 (14.6)
Race
White	836 (77.8)
Black or African American	112 (10.4)
Multiracial	36 (3.4)
Other	36 (3.4)
Asian	33 (3.1)
Prefer not to answer	16 (1.5)
American Indian or Alaska Native	5 (0.5)
Ethnicity
Hispanic or Latino	79 (7.4)
Not Hispanic or Latino	962 (89.6)
Prefer not to answer	33 (3.1)

AT, alopecia totalis.

Relative Importance of AA Treatment Domains

The most important domains were the ability for the treatment to achieve hair regrowth (95.6%, CI 94.1–96.6%, n = 1,026) and the availability of information about the treatment contributing to personal understanding (e.g., via doctor or online) (93.9%, CI 92.3–95.1%, n = 1,008), followed by treatment side effects (89.1%, CI 87.1–90.8%, n = 957), cost (75.7%, CI 73.0–78.2%, n = 813), and lastly convenience of use (68%, CI 65.1–70.7%, n = 730) as shown in Figure 1. Respondents with a history of alopecia totalis significantly rated side effects as more important (p = 0.004). A comparison of the number and proportion of respondents who rate each domain as important among participants who identify as white versus nonwhite was performed. The domains rated important by the highest proportion of respondents for both groups were hair regrowth (white: n = 802, 95.9%; nonwhite: n = 224, 94.1%; p = 0.284), availability of information about the treatment (white: n = 788, 94.3%; nonwhite: n = 220; p = 0.288), treatment side effects (white: n = 738, 88.3%; nonwhite: n = 219, 94.1%; p = 0.125), followed by cost (white: n = 617, 73.8%; nonwhite: n = 196, 82.4%; p = 0.006) and convenience (white: n = 546, 65.3%; nonwhite: 184, 77.3%; p < 0.001). 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. These results are summarized in Table 2.

Fig. 1.

Respondents' reported importance of each treatment domain. The treatment domains were information about treatment (via doctor or online), hair regrowth ability, side effects, cost, and convenience (topical vs. pill vs. injection, frequency, home vs. clinic). The y-axis delineates the respondents' rating of each treatment domain; each treatment domain is delineated by a color.

Table 2.

Analysis of the number and proportion of respondents who ranked each domain as “extremely important” and “very important” based on identified race

	White, n (%)	Nonwhite,* n (%)	p value**
Hair regrowth	802 (95.9)	224 (94.1)	0.284
Information	788 (94.3)	220 (92.4)	0.288
Side effects	738 (88.3)	219 (92.0)	0.125
Cost	617 (73.8)	196 (82.4)	0.006
Convenience	546 (65.3)	184 (77.3)	<0.001

^*Nonwhite includes Black or African American, Multiracial, Asian, American Indian or Alaska Native, other, prefer not to answer.

^**Fisher's exact test.

Discussion

While participants ranked all domains independently, based on the proportion of participants that ranked the domains as extremely and very important, these data suggest that AA patients value hair regrowth potential, availability of information about the treatment to inform one's personal knowledge base, and side effects over convenience and cost when evaluating treatment options. At a population level, patients who identified as nonwhite valued cost and convenience more than white respondents, showing that race may impact patient preferences. However, the order of importance of the five domains was the same between groups. The severity of AA or current hair loss did not influence this order, except in patients with alopecia totalis who considered the side effects of treatment more than patients with less severe disease.

A recent study showed that AA patients prefer to make treatment decisions in collaboration with their dermatologists and that engaging in shared decision-making results in less decisional regret [5]. These findings identify key domains that can serve as a starting point in shared decision-making between patients and physicians. Knowledge of patients' treatment-related priorities can streamline and enhance dermatologists' synthesis and delivery of key information for existing drugs while highlighting areas of improvement for future therapeutics.

These results should be considered within the parameters of the study design, which was a survey from a nonrandomized population with most participants being white females. Importantly, insurance status was not addressed; therefore, it is unclear if participants were evaluating insurance-adjusted cost. Future studies should confirm these findings in other patient populations.

Statement of Ethics

This study was approved by Mass General Brigham Institutional Review Board, approval # 2020P001991. 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, Jane Han BS, and Sophia Reyes-Hadsall 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 & Hers, Digital Diagnostics, and Bioniz.

Funding Sources

No sources of funding were obtained for this study.

Author Contributions

Lara Drake, Jane Han, and Sophia Reyes-Hadsall: conception of study design, acquisition, analysis, 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.

Data Availability Statement

All data generated or analyzed during this study are included in this article and its online supplementary material. Further inquiries can be directed to the corresponding author.

Supplementary Material

Supplementary data

Funding Statement

No sources of funding were obtained for this study.