A literature search and patient survey was done by The Canadian Skin Patient Alliance (CSPA) in 2017 resulting in a report published and title as “Scarred for Life: A National Report of the Patient Experience Living with Hidradenitis Suppurativa (HS)“.
Quoting CSPA: “In 2017, The Canadian Skin Patient Alliance (CSPA) conducted a literature search and survey of patients with HS (formally diagnosed or self-diagnosed) to answer critical questions regarding gaps in patient care, and deficiencies in provincial healthcare systems. The focus of this research was to describe the patient experience from diagnosis and beyond, including path to diagnosis, symptom control, experience with treatments, healthcare utilization, patient needs, and impact on quality of life.”
The report can be accessed as a PDF along with other valuable information on the CSPA website and section they have dedicated to Hidradenitis Suppurativa.
Continue to CSPA: skinpatientalliance.ca/hidradenitis-suppurativa