Support Group Utilization and Perspectives Among Hidradenitis Suppurativa Patients

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Devea De
Terri Shih
Swetha Atluri
Denise Fixsen
Brindley Brooks
Jennifer Hsiao
Vivian Shi


Hidradenitis Suppurativa, skin of color, support group


Introduction: Hidradenitis suppurativa (HS) is a chronic inflammatory dermatosis associated with significant psychosocial burden. HS patients are more likely to experience mental health comorbidities such as depression and anxiety. They may also experience isolation due to fear of stigmatization as HS lesions are often associated with pain, scarring, and odor.  This study investigates the perspectives of HS patients on HS support groups and the usage of this resource among this population.

Methods: An anonymous Redcap survey was utilized via online social media HS support groups between 10/2021-1/2022 to collect demographic, usage, and perspective data. Comparative statistics were conducted and p-value of <0.05 was considered significant.

Results: Of the 166 respondents, 78% respondents were part of an HS support group however, only 12% of respondents were recommended to join by their main HS healthcare provider and most (68%) learned about support groups through their own internet searches. Most respondents were daily (42%) and weekly (38%) support group users. Virtual meetings were preferred by the majority compared to in person meetings (50% vs 13%). The top reasons respondents reported attending support groups were to better understand HS, increasing their knowledge of HS resources, and access to treatment/care tips. Respondents without dermatologists as their main HCP and skin of color (SOC) respondents were more likely to report that support groups improved their care of HS (4.29 vs 3.90, p=0.031).

Conclusion: Our findings highlight the preferential format of virtual support groups and that support groups may be an underutilized resource by healthcare providers for their patients. Support groups may help to narrow gaps in education when patients are unable to access or have delays in obtaining dermatological care, especially in SOC patients who have historically experienced higher rates of healthcare disparities.


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