Department of Medical Sciences, Section of Dermatology, University of Ferrara, Ferrara, Italy.
Operative Unit of Dermatology, SS. Giovanni e Paolo Hospital, Venice, Italy.
J Eur Acad Dermatol Venereol. 2016 Nov;30(11):1965-1970. doi: 10.1111/jdv.13687. Epub 2016 May 2.
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.
To describe the HS patient journey in Italy, identify unmet needs and provide a proposal for integrated patient care.
A multidisciplinary panel of leading Italian experts met to evaluate routine clinical practice and patient experience, and analyse the available scientific evidence on HS.
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.
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.
化脓性汗腺炎（HS）是一种慢性、进行性、炎症性、使人衰弱的皮肤疾病，其在普通人群中的发病率低于 1%。HS 的诊断通常会延迟数年，即使诊断出来，治疗也具有挑战性。因此，HS 对患者的生活质量有很大的负面影响。
描述意大利化脓性汗腺炎患者的就医旅程，确定未满足的需求，并为综合患者护理提供建议。
一个由意大利领先的多学科专家小组开会，评估常规临床实践和患者体验，并分析化脓性汗腺炎的现有科学证据。
根据从临床实践和患者体验中综合获得的数据，构建了意大利化脓性汗腺炎患者就医旅程的综合图谱。该旅程是非线性的，可以分为四个大致重叠和相交的阶段：（i）发病至诊断；（ii）就诊循环；（iii）治疗循环；（iv）与 HS 共存。确定了一些未满足的需求，包括医疗保健提供者和患者对疾病的认识提高。
可以通过为医生提供继续医学教育和为患者开发教育材料，以及更多地利用社交网络，来解决提高疾病认识的问题。此外，还认为建立综合治疗中心是一个值得追求的目标，这将为患者提供接受多学科护理的机会，理想情况下由皮肤科医生协调治疗，同时还需要外科医生、心理学家、内分泌学家、胃肠病学家、疼痛专家、妇科医生和儿科医生等。最后，还需要制定化脓性汗腺炎的标准化管理方案。
