Less than a third of individuals with alopecia areata (AA) report attending a support group for the condition, according to recent findings, with the main reasons for attendance being connecting emotionally with other patients and sharing experiences with treatment.¹

The condition of alopecia, a chronic autoimmune disease in which discrete patches of non-scarring loss of hair are seen among patients, has had well-established negative impacts on patients' life quality. The condition also has been shown to be connected to psychiatric conditions.^2,3

The investigators of this new research letter suggested that complementary therapies may be necessary, given the slower time to the point of remission and the scores patients have given as far as satisfaction with current therapies. To address this, new research was led by Reneé Haughton, MD, from the department of dermatology at the University of California, Davis, in Sacramento.

“Support groups are one form of complementary therapy whose use has not been well documented in AA,” Haughton and colleagues wrote. “We conducted a cross-sectional survey to describe support group use and experience.”

Background and Findings

The investigators conducted their cross-sectional research in July 2023 using data from the National Alopecia Areata Foundation listserv. They looked at adults aged 18 and above with alopecia areata, collecting survey responses and using free response inquiries subjected to inductive thematic analysis.

The research team used Fisher exact tests, χ2 tests, and t tests using SPSS software, with statistical significance being set at P < .05. The team received ethical clearance from the University of California, Davis Institutional Review Board resulting from their implementation of de-identified data.

Overall, the investigators had 781 recipients of the survey and 510 total respondents taking part. There were 27.5% who had reported attendance of a minimum of a single in a support organization.

The research team noted that the median (IQR) number of meetings with support groups attended was shown to be 5 (2-10). Respondents engaging in such groups, versus non-participants, tended to have a longer mean (SD) disease duration (20.7 [17.8] compared to 16.7 [14.9] years; P = .02).

These individuals also were shown to have had greater levels of severe scalp hair loss prevalence exceeding 75% (62.1% compared to 49.7%; P = .046), and the universalis subtype of alopecia areata (53.6% compared to 34.3%; P < .001).

Furthermore, the support group attendees were found by the investigators to have had a lower mean (SD) Dermatology Life Quality Index (5.7 [6.1] vs 7.3 [6.8]; P = .02). This suggested a better quality of life overall, and such patients were found to be more likely to be recommended to a group through their clinician (27.9% compared to 8.6%; P < .001).

Some of the major draws reported by attendees to such groups were support on an emotional level, the ability to diminish feelings of isolation, gaining access to additional information and alopecia resources, and the chance to be able to exchange personal experiences. As far as rationale for attendance of support groups, the research team showed that among the 140 individuals in their assessment, emotional connection with other patients was most common among 46.4%, followed by sharing experiences with therapies for 25.7%, and learning more about the skin disease among 11.4%.

Despite some of these encouraging ideas, the investigators did find that levels of satisfaction were shown to be low, with only 4.3% and 8.6% of respondents describing high levels of satisfaction. The team found that 27.9% were neutral, 34.3% reported being dissatisfied and 19.3% reported being very dissatisfied.

The major areas described as needing enhancement included greater frequency and availability of interactions with groups and the dissemination of further medical resources and information in general.

Overall, the cross-sectional study was able to highlight that greater severity of disease and clinician recommendation were the main factors linked to support group engagement. These findings suggested that individuals with alopecia may delay their search for support group therapy until their symptoms begin to exacerbate.

Given this fact, the investigators noted that there is a pivotal role of clinicians in referrals. The research team added that the aforementioned lower satisfaction ratings among support group attendees highlighted the necessity for reassessing the existing framework.

The investigators lastly noted that the current minimum requirement of 4 meetings in a given year, stipulated by the National Alopecia Areata Foundation, may not be what is necessary to allow for patients’ desired goal of connection and sharing of experience for those taking part in support groups.

“Limitations include a study population that may not be representative of the entire population with AA and a variable time period since the last support group meeting,” they wrote. “Nevertheless, this study sheds light on the use of support groups among patients with AA and emphasizes the necessity of a feedback-driven approach to optimize support group satisfaction and efficacy.”

References

1. ^{Haughton R, Herbert S, Meyer S, Kam O, Maverakis E, Kiuru M. Support Group Participation Among Patients With Alopecia Areata. JAMA Dermatol. Published online February 07, 2024. doi:10.1001/jamadermatol.2023.6037.}
2. ^{King B, Ohyama M, Kwon O, et al; BRAVE-AA Investigators. Two phase 3 trials of baricitinib for alopecia areata. N Engl J Med. 2022;386(18):1687-1699. doi:10.1056/NEJMoa2110343.}
3. ^{Hussain ST, Mostaghimi A, Barr PJ, Brown JR, Joyce C, Huang KP. Utilization of mental health resources and complementary and alternative therapies for alopecia areata: a U.S. survey. Int J Trichology. 2017;9(4):160-164. doi:10.4103/ijt.ijt_53_17.}