Presenter: Rachael Manion, Canadian Skin Patient Alliance
Twitter Handle: @CanadianSkin
(HS) is a painful dermatological condition affecting up to 4% of Canadians and
characterized by recurrent and malodorous nodules in skin folds. We conducted a
comprehensive international survey to understand patient experiences with HS
In January 2020, we conducted an online survey of individuals with HS. To facilitate dissemination, we engaged HS-related patient advocacy groups, physician groups, and online patient support groups. In addition to asking respondents about their diagnostic journey and psychosocial impact of HS, we focused on experiences with treatments.
In total, 537 individuals completed the survey. Of the 73 respondents from Canada, average age was 36.6 years and 94% were female. All had attempted multiple medications, surgeries and lifestyle modifications (mean = 15) to manage HS symptoms. Of all treatments employed, non-incision and drainage surgical treatment offered the highest benefit: 26.5% of the 30 patients who had surgery reported significant improvement. Biologics were used by 35.9% of respondents, while long-course antibiotics were more commonly used (84.1%); a minority reported significant improvement (18.8% and 6.3%, respectively). The primary goals for treatment were to control HS symptoms (92.2%), cure HS completely (71.9%), and enable enjoyment of social activities (68.8%); only 20% reported that they were satisfied with the ability of currently available treatments and therapies to meet these goals.
Individuals in Canada with HS have attempted numerous treatments to manage symptoms, with minimal improvement for most. Access to new and effective treatments is critical to improving health outcomes and quality of life for these patients.