The Hidradenitis suppurativa patient journey in Italy: current status, unmet needs and opportunities

Abstract

Background: Hidradenitis suppurativa (HS) is a chronic, progressive inflammatory, debilitating, follicular disease of the skin with a reported incidence of less than 1% in the general population. Diagnosis of HS may typically be delayed for years, and even when diagnosed, is challenging to treat. Thus, HS has considerable negative impact on patient quality of life.

Objectives: To describe the HS patient journey in Italy, identify unmet needs and provide a proposal for integrated patient care.

Methods: A multidisciplinary panel of leading Italian experts met to evaluate routine clinical practice and patient experience, and analyse the available scientific evidence on HS.

Results: A comprehensive map of the journey of the HS patient in Italy was built based on integrated data obtained from clinical practice and patient experience. The journey is non-linear and can be grouped into four broad stages that are somewhat overlapping and intersecting: (i) onset to diagnosis; (ii) circle of visits; (iii) circle of treatments; (iv) living with HS. Several unmet needs were identified that included greater awareness of disease by both healthcare practitioners and patients.

Conclusion: Improved disease awareness can be addressed through continuing medical education for physicians and development of educational materials for patients, in addition to greater utilization of social networks. Moreover, the development of integrated treatment centres was considered a worthwhile goal, and would offer patients the possibility to receive multidisciplinary care, ideally with dermatologists coordinating treatment, along with surgeons, psychologists, endocrinologists, gastroenterologists, pain specialists, gynaecologists and paediatricians as needed. Lastly, standardized management protocols for HS are also needed.