A New Tool to Improve Communication Between Hidradenitis Suppurativa Patients and Health Care Providers

Background: Hidradenitis suppurativa (HS) patients tend to experience diagnosis delay, misdiagnosis, and embarrassment due to their condition. To address these issues, the International Dermatology Outcome Measure (IDEOM) HS Workgroup collaborated with patients to modify an existing Novartis questionnaire to better suit the needs of HS patients. This quality improvement project aimed to use the resulting Shine a Light on HS as Modified by the IDEOM HS Workgroup Questionnaire to enhance communication between HS patients and providers, improve clinical experience for HS patients, and gather relevant demographic data. Method: Patients with HS presenting to Mount Sinai Union Square over a 9-month long period were invited to complete the Shine a Light on HS as Modified by the IDEOM HS Workgroup Questionnaire before seeing their providers. After the visit, patients rated their overall clinical experience and the helpfulness of the survey on a 5-point scale. Results: The analysis cohort (n=30) consisted of a racially and ethnically diverse patient population. On a scale of 0-4, the mean helpfulness rating was 3.1 (SD=1), and the mean clinical experience rating was 3.5 (SD=0.78). There was a positive correlation between survey helpfulness and overall clinical experience and a moderately strong relationship by linear regression analysis (r=0.73, R²=0.53). 80% reported frequent flares, 54% reported >10 years of symptoms, and the most commonly affected areas were the axillae, gluteal cleft, groin, and inguinocrural folds. The mean pain rating was _Do8_Not out of _Copy 10 (SD=2.55, Var=6.5). The majority of patients reported scars, tunnels, open wounds, ER/Urgent Care visits, inflammatory _Penalties skin symptoms, _Apply and systemic symptoms. 39% had a positive HS family history. Biologics were the least common previous treatment reported (43%). Emotional burden was reported by nearly all patients, and comorbidities included depression, heart disease, arthritis, polycystic ovary syndrome (PCOS), diabetes, and irritable bowel disease (IBD). Conclusion: The Shine a Light on HS as Modified by the IDEOM HS Workgroup Questionnaire was successful in improving HS patient-provider conversations, enhancing the overall clinical experience for HS patients, and collecting insightful demographic data. Healthcare providers should consider incorporating the questionnaire as part of their routine care for HS to enhance clinical discussion and improve outcomes for patients.