Hidradenitis Suppurativa From a Patient Perspective Including Symptoms and Self-Treatment

Hidradenitis Suppurativa (HS) is a chronic inflammatory disordercommonly affecting body folds. It can significantly impair quality of life due to the physical, psychological, and socialturmoil experienced by patients. Treatment remains a challenge.Limited data on the HS patient experience, such as self-treatment exists.

This was a single-center cross-sectional study, utilizing a paper-based survey. Surveys were mailed out to all HS patients from the dermatology clinic and completed on a voluntary basis. Demographics, disease characteristics, medical and family history, treatments tried, and life quality were documented.

The response rate was 49.4% (41/83), with a female predominance (26/41). Eighty-five percent (35/41) were Caucasian with an average age and BMI of 39.0 ± 16.78 and 30.71 ± 7.02, respectively. In total, 24.4% (10/41), 56.0% (23/41), and 19.5% (8/41) had Hurley I, II, and III, respectively. Lesions affected the genital region (75.6%), thigh/groin (68.2%), and axilla (46.3). Almost half (49%) of patients experienced an average of 1-2 flares per month. The most bothersome symptoms were pain (92.7%), discharge (68.3%), malodor (63.4%), and itch (61%). Depression (53.7%), severe facial acne (14.6%), and hypertension (14.6%) were the most common co-morbidities. Treatments used included antibiotics (82.9%) and surgical excision (34.2%) were. Over 90% of patients reportedself-treatment of lesions by squeezing (80.5%), soaking (53.7%), and lancing (41.4%).

This study provides insight into the patient perspective of HS. We identify itch as a symptom that is not frequently associated with HS and reveal how commonly patients utilize various types of self-treatment in their experience of disease.