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

We were able to characterize significant HS historical information about our diverse patient population seeking care from a renowned HS specialist at a tertiary care center. As such, many of our patients experienced significant disease burden, the severity of which frequently goes overlooked. Nearly all patients identified significant morbidity and impact across all domains of their lives. The emotional impact of HS is often under-appreciated, but more than half of our patients have been diagnosed with depression. Heart disease, arthritis, PCOS, diabetes, and IBD were other commonly reported comorbidities, suggesting that clinicians should support screening for these conditions as a part of comprehensive care. Though the overwhelming majority of our patients report having active disease with a mean pain rating of 8, less than half of them have been treated with biologic medications. The subset of patients who tried biologics were characterized by the following: 54% of those with >5 flares in 6 months, 62% of those with >10 years of symptoms, and 41% of those with a pain rating of >8. With adalimumab already FDA-approved for HS and novel biologics coming to market, these numbers expose a potential gap in care for patients who are failing their current therapies. Our survey results underscore the necessity of improving HS patient care.

The overwhelming majority of our patients found the Shine a Light on HS as Modified by the IDEOM HS Workgroup Questionnaire helpful to their clinic visit. This sentiment positively correlated with overall clinical experience. It is important to note that patients were visiting a tertiary care center to be seen by an HS specialist, so patient-provider conversation at baseline is likely above average when compared to non-specialist counterparts. As such, while our results are impressive, they may underestimate the value of this survey. Potential applications to maximize the utility of the Shine a Light on HS as Modified by the IDEOM HS Workgroup Questionnaire include general dermatology, private practice dermatology, family medicine clinics, OBGYN clinics, and primary care practices where providers may not be as well versed in HS. The survey can be downloaded free of charge on the IDEOM website (https://www.dermoutcomes.org/workgroups/hidradenitis-suppurativa.php).

Funding: This project was funded by the International Dermatology Outcome Measure non-profit organization.

 

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