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

February 2024 | Volume 23 | Issue 2 | 105 | Copyright © February 2024


Published online January 25, 2024

Melissa P. Zundell BSa, Joseph F. Merola MD MMSb, Alice B. Gottlieb MD PhDa

aDepartment of Dermatology, Icahn School of Medicine at Mount Sinai, New York, NY 
bDepartment of Dermatology and Medicine, Division of Rheumatology, Harvard Medical School, Brigham and Women's Hospital, Boston, MA

Abstract
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 8 out of 10 (SD=2.55, Var=6.5). The majority of patients reported scars, tunnels, open wounds, ER/Urgent Care visits, inflammatory skin symptoms, 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. 

J Drugs Dermatol. 2024;23(2):105-109.   doi:10.36849/JDD.7624

INTRODUCTION

Hidradenitis suppurativa (HS) is a chronic, inflammatory skin condition characterized by abscesses, nodules, fistulae, draining sinus tracts, and scarring.1 Though the pathogenesis of HS is not fully understood, the disease process centers around the pilosebaceous apocrine unit.1 Thus, disease activity is generally high in the warm, wet areas, where these pilosebaceous-apocrine units are enriched, such as the axillae and the groin.2 The condition can be severely disfiguring and be a source of embarrassment, pain, and diminished quality of life for patients.1 HS is often misdiagnosed as abscesses, acne, or folliculitis.3 On average, it may take patients 10 years and seeing more than 3 different providers before receiving their correct HS diagnosis.3 This delay is associated with increased disease burden and quality of life impairment.3 Due to patient embarrassment, frequent misdiagnosis, diagnosis delay, and disease severity, there exists a need to improve clinical discussion and experience for HS patients.

The International Dermatology Outcome Measure (IDEOM) is a nonprofit organization with the mission to establish patient-centered outcome measures within dermatology to improve both treatment and research efforts.4 The Shine a Light on HS Doctor Conversation Starter is a 15-item questionnaire developed by Novartis to help patients self-diagnose their HS and talk to their dermatologists about their symptoms. The IDEOM HS Workgroup modified this questionnaire. Patients and HCPs met at the 2022 IDEOM annual meeting and then subsequently worked to improve the questionnaire using 
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