patient input. Through a multi-round process, the questionnaire was updated to better serve the needs of HS patients with targeted prompting for information important to providers and patients. The resulting 12-item questionnaire asks patients about their HS history, experience with the condition, and concomitant symptoms and diagnoses.
We launched a 9-month long quality improvement project using the Shine a Light on HS as Modified by the IDEOM HS Workgroup Questionnaire. Our quality improvement project had 3 specific aims: (1) To facilitate more productive conversations between HS patients and their providers, (2) To improve the overall clinical experience of HS patients, and (3) To collect relevant demographical data characterizing the HS history of the patients presenting to a tertiary care center.
MATERIALS AND METHODS
Patients with HS presenting to the Mount Sinai Union Square tertiary care center from July 2022 to March 2023 were identified by chart review and asked to complete the 12-item Shine a Light on HS as Modified by IDEOM HS Workgroup Questionnaire at the clinic before seeing their providers. All patients with HS
We were also able to collect important demographical information about our HS patient population and their symptom history and burden. The mean age of our patients was 37 years old with a female to male ratio of 4:1. Our patient population demonstrated both racial and ethnic diversity with patients self-identifying their race as African American (43%), White (10%), Asian (6%), and Other (40%) and their ethnicity as Hispanic (27%), Non-Hispanic (47%), and Unknown (27%). The demographic distribution of our patients is summarized in Table 2. 80% of our patients reported more than 5 instances of symptom flare over the last 6 months. At least 54% of our patients have been experiencing symptoms for 10 years or more. In order, the most commonly affected areas were the axillae (77%), the gluteal cleft (60%), the groin (53%), and the inguinocrural folds (43%). The overwhelming majority of our patients experienced inflammatory skin symptoms, such as redness, pain, leakage, swelling, inflammation, itching, and odor. A majority of our patients also experienced systemic symptoms such as fatigue (57%) and joint pain (43%). On a pain scale of 0-10, the mean pain rating was 8 (SD=2.55, Var=6.5). The overwhelming majority of our patients reported their HS caused scars, tunnels, and open wounds. 53% of our patients have had to visit the ER or Urgent Care due to their HS over the last year. 39% of our patients reported a positive HS family history. The most common previous treatments were antibiotics (83%), injections into lesions (67%), OTC NSAIDs (63%), prescription corticosteroid creams/ointments (63%), and incision and drainage (63%). Biologics were the least common previous treatment reported (43%). Nearly all patients reported significant emotional burden from their HS and are impacted across all domains of their lives. Patients reported comorbidities of depression (50%), heart disease (17%), arthritis (13%), PCOS (13%), diabetes (10%), and IBD (7%). The survey responses characterizing the HS history, burden, and symptom impact of our HS patient population are summarized in Table 3.
