Hidradenitis suppurativa influences patients' lives in many ways. It is therefore necessary to focus on the effects of the disease on daily life in order better to define patient-related outcomes in hidradenitis suppurativa studies. Interviews were conducted with 12 patients with hidradenitis suppurativa. Initial single interviews were followed by semi-structured and structured qualitative focus group interviews in order to improve the richness of the data and obtain in-depth understanding of the impact of the topics. Important topics were found to relate to aspects of interpersonal contact, especially in relation to smell and appearance, various emotional reactions, and feelings of lack of control. It was found that hidradenitis suppurativa has a great emotional impact on patients and promotes isolation due to fear of stigmatization. Shame and irritation are frequent and relate to smell, scars, itching and pain. Quality of life is adversely affected and professional support is needed.

Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy.

Background Hidradenitis suppurativa (HS) is a chronic recurrent inflammatory skin disease with abscess formation

We found that 39.4% of the sample reported remission of HS. Suspected risk factors appeared to influence the prognosis. Smoking and obesity were significantly linked to a lower rate of self-reported remission. The notion that lifestyle factors play a role in HS appears to be supported by this survey.