Internet-based recruitment for online survey characterizes hidden populations of hidradenitis suppurativa patients

Summary: Abstract Body: Hidradenitis suppurativa (HS) is a prevalent, debilitating, inflammatory skin disease. Most HS research is conducted in cohorts that are recruited through clinical services. However, high rates of unemployment and disability among individuals with HS may deter engagement with healthcare services, particularly in the US where health insurance is tied to employment. This calls into question the generalizability of HS research using clinic-based sampling. To address this, we recruited potential participants through Google Adverting to complete an online survey that assessed for potential HS symptoms and comorbidities. Over three months, 2,147 individuals clicked on advertisements directing them to the survey. Of these, 407 matched the inclusion criteria, 109 consented to participate, 106 began the survey, and 73 completed the survey. Among those who completed the survey, 97.3% consented to be recontacted for future research. Eligibility rate was low (18.9%), consent rate was moderate (26.8%), and completion rate was high (68.9%). Analysis of self-reported comorbidity data reveals notable divergence in the prevalence of several comorbidities between internet and clinical cohorts: 24.7% vs 34.3% for hypertension; 50.9% vs. 11.6% for obesity; and 65.8% vs. 4.2% for alcohol consumption, respectively. Additionally, 13.6% of internet respondents assigned female at birth reported polycystic ovarian syndrome, compared to 4.0% in clinic-based cohorts. Limitations include the use of self-reported data without validation, which we are addressing with our current study. These findings suggest a lack of generalizability between clinical and internet cohorts, indicating the need for diverse recruitment methods. Leah Moogan¹, Julia Wright³, Eric W. Schrimshaw², Lynn Petukhova¹ 1. New York University, New York, NY, United States. 2. University of Central Florida, Orlando, FL, United States. 3. Columbia University, New York, NY, United States. Clinical Research: Epidemiology and Observational Research