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

Participants completed the web-based survey after providing electronic informed consent; the survey took most participants approximately 20 min to complete. The survey was divided into four key areas of interest, including disease characteristics, patient burden and social impacts, healthcare and treatment experience and sociodemographic and clinical characteristics.

For the disease characteristics section, participants completed single-item patient-reported outcomes (PROs) to evaluate their current severity and severity at its worst for key AA signs and symptoms, including hair loss on the scalp, eyebrows, eyelashes, nail appearance and eye irritation. The PROs were developed with input from clinical experts and patients with AA [6, 7]. Scalp hair loss was defined as “no missing scalp hair (0%),” “a limited area of scalp hair loss (1–20%),” “a moderate area of scalp hair loss (21–49%),” “a large area of scalp hair loss (50–94%)” or “nearly all or all of scalp hair missing (95–100%).” For eyebrow hair loss, participants could select “full eyebrows on each eye,” “minimal gap(s) or minimal amount of thinning,” “large gap(s) or large amount of thinning” and “no or barely any eyebrow hairs.” Similarly, for eyelashes, response options included “full eyelashes,” “minimal gap(s) along eyelids,” “large gap(s) along eyelids” and “no or barely any eyelash hair.”

The Skindex-16 for AA [6] was included in the survey to evaluate disease burden. The wording of the Skindex-16 had slight wording changes to refer to scalp and AA, yielding three subscale scores, namely, Symptoms, Emotions and Functioning. Domain scores range from 0 to 100, with higher scores indicating a higher impact of AA. For the healthcare and treatment experience section, participants self-reported which treatments for AA they had ever used, and those they were currently using, as well as treatment satisfaction and reporting on impressions of their interactions with their HCP. A single-item question was also included to evaluate participants’ willingness to try a new, regulatory-approved treatment for AA (“If a new, regulatory-approved prescription treatment was available, would you be willing to try it, understanding the need to take it long-term?”; response options: yes, no, not sure).

A total of 1327 participants with self-reported AA completed the survey. The mean age of the sample was 39.7 (SD 12.3) years, and a little over half were female (58.4%). Approximately half were White, non-Hispanic (52.7%). Over two thirds were married (69.9%) and living with a partner or spouse (70.1%). There was variability among participants’ education levels, with 12.2% (n = 162) having a high school degree or less, 28.3% (n = 376) having an associate, technical or trade school degree, 44.5% (n = 591) having a college degree and 14.9% (n = 198) having a post-graduate degree. Participants had employer-provided insurance (49.7%) or Medicare (25.6%) [Electronic Supplementary Material (ESM) Table 1].

On average, participants had experienced signs and symptoms of AA for 11.5 (SD 12.5) years and were diagnosed by an HCP 10.5 (SD 12.2) years ago. Participants reported that their current hair loss was most often AA monolocularis (22.8%) or AA multilocularis/patchy (35.1%), with 7.9% reporting ophiasis, 12.1% reporting totalis, 18.7% reporting universalis and only 3.4% reporting no current hair loss (Table 1).

Participants reported their current scalp hair loss as categorized on the Scalp Hair PRO as being in “a limited area” (1–20% of scalp; 39.8%), a “moderate area” (21–49% of scalp; 26.2%), a “large area” (50–94%; 10.2%) and “nearly all or all” (95–100%; 21.3%), with very few reporting “no missing hair” currently (2.6%). Most participants had full eyebrows (26.6%) or minimal gaps or thinning in the eyebrows (38.8%), and 20.7% had no or barely any eyebrows. Participants experienced a wide range of eyelash hair loss severity, with 32.5% having full eyelashes, followed by no or barely any eyelashes (19.4%), large gap(s) (14.1%) and minimal gap(s) (34.1%) (Table 2).

There was a significant relationship between the extent of current scalp hair loss and the current severity of other signs and symptoms associated with AA (all p < 0.001) (ESM Table 2). Participants who reported more severe scalp hair loss also tended to report greater severity of other AA signs and symptoms, including eyebrow and eyelash hair loss. In addition, participants who reported 50–94% or 95–100% of scalp hair loss were more likely to have AA for longer duration (p < 0.001) (ESM Table 3).

Most participants (71.7%) were diagnosed with AA by a dermatologist, and approximately half (58.0%) were still currently seeing a dermatologist for their AA. A quarter of the sample (24.5%) was not currently seeing an HCP for treatment for their AA. The highest proportion of patients not currently seeing an HCP for their AA were those with 95–100% of scalp hair missing. Conversely, the highest proportion currently seeing an HCP were those with 21–49% of scalp hair missing, of which 59.6% were seeing a dermatologist (p < 0.001) (Fig. 1). Approximately half of the participants (51.8%) felt their HCP adequately addressed their concerns, while 32.5% did not. As was expected, participants with no missing hair were more likely to report feeling their HCP adequately addressed their concerns with AA (p = 0.016).

Many participants had some experience with topical treatments (57.9%), injection treatments (41.3%), non-medical interventions (e.g. wigs) (34.6%), oral treatments (33.8%) and dietary changes or supplements (32.8%). Relatively fewer participants were currently using topical treatments (26.9%), injection treatments (13.2%) or oral treatments (24.3%) (ESM Table 4). Most participants currently on treatment had either 1–20% or 21–49% of scalp hair missing. Additionally, the highest proportion of patients (55.6%) reporting that they currently use non-medical interventions (e.g. wearing wigs or camouflage) were those with 95–100% of scalp hair missing (ESM Table 4).

Participants were also asked to report their satisfaction with their current treatment. Most participants currently taking oral treatment reported being somewhat satisfied (50.0%) or very satisfied (31.3%). Participants taking topical treatments were mostly somewhat satisfied (57.8%) or very satisfied (24.8%). Most participants taking injections (70.8%) or other alternative treatments (75.0%) were at least somewhat satisfied with their current treatment. There was no difference in treatment satisfaction by severity of hair loss for oral treatments (p = 0.194) or injection treatments (p = 0.191), and minimal differences in satisfaction were seen for topical (p = 0.006) and other treatments (p < 0.001). Overall, participants with 95–100% of scalp hair missing were more likely to report lower satisfaction with topical or other alternative treatment options.

As a part of the survey, participants were also asked if they would be willing to try a new, regulatory-approved treatment for AA long-term. Most participants (72.7%) said they would be willing and 18.4% reported they were not sure. Participants with “1–20%” (72.7%), “21–49%” (82.1%) or “50–94%” (77.0%) of scalp hair missing were willing to try a new treatment, while 44.1% with “no missing scalp hair” and 62.2% with “95–100% of scalp hair missing” were willing to try.

Participants reported impaired HRQL, as defined by the Skindex-16 for AA, for the Emotions domain (mean 63.0, SD 24.9), Functioning domain (mean 52.5, SD 27.0) and Symptoms domain (mean 42.4, SD 26.8). There was a non-linear relationship between HRQL and current AA hair loss (Fig. 2) with participants who had “21–49%” or “50–94%” of scalp hair missing reporting the largest impacts due to AA compared to participants with no missing scalp hair or 95–100% of scalp hair missing.

For current scalp hair loss, the highest burden on symptoms due to AA was seen for participants with “21–49% of scalp hair missing.” Participants with “50–94% of scalp hair missing” reported the highest burden due to Emotional impacts, and both “21–49%” and “50–94% of scalp hair missing” participants reported the most impact due to Functioning (p < 0.0001). When evaluating other key signs and symptoms of AA, participants with full eyebrows or eyelashes and those with no or barely any reported a significantly lower impact on Symptoms and Functioning (p < 0.0001). Participants with full eyebrows reported the lowest impact on Emotions, while there was no significance difference among participants with minimal to no or barely any eyebrow hairs (p < 0.0001) (ESM Fig. 1). No relationship was found between degree of eyelash hair loss and Emotional impacts (p = 0.2127) (ESM Fig. 2).