Hidradenitis suppurativa as seen by the patient

Abstract

Background. Hidradenitis suppurativa (HS) is a common disease that significantly reduces the quality of life of patients of reproductive age, while its exact prevalence is unknown in most countries due to untimely and poor-quality diagnosis. Aim. In order to clarify the prevalence of HS, an analysis of the structure of newly identified cases of this disease was carried out in the conditions of the consultative and diagnostic center of the State Research Center of Dermatovenereology and Cosmetology of the Ministry of Health of the Russian Federation for the period 2008–2021 inclusive. In order to study the characteristics of the course of HS, its impact on behavior and receipt of medical care from the patient’s point of view, an anonymous quantitative online survey of patients was conducted. The patient questionnaire “Shin a light on hidradenitis” was used as a basis. Methods. Аnonymous quantitative online survey of patients was conducted. The patient questionnaire “Shin a light on hidradenitis” was used as a basis. Results. For the period 2008–2021 exclusively under the section “L73 Other diseases of the hair follicles”, 765 cases were diagnosed in the State Scientific Center for Disease Control and Prevention (0.36% of the total number of all newly diagnosed cases). The diagnosis of GG (ICD code L73.2) was first established only in 59 cases (about 8% of identified cases using code L73). 1035 respondents took part in the survey. The survey revealed that patients with HS are worried about: 66% — swelling, 55% — pain, 38% — purulent discharge and/or blood, 25% of patients note a disturbing look. Most patients rated the severity of pain as moderate (29%) and low (29%) pain, severe and very severe pain — 12 and 7% respectively. Among the treatments used for HH, patients recommended: antibiotics (34%), opening and drainage (32%), prescription corticosteroid creams/ointments (11%), and biologics (4%). In 44% of patients, a visit to a doctor to provide qualified assistance continues; 18% of patients are observed by one doctor (dermatologist and/or surgeon); 9% of patients visited 2–3 doctors before receiving the necessary help. Conclusion. All over the world, the “search” for a specialist who will correctly diagnose, prescribe adequate treatment and accompany its long process is still a complex and unsolved task. In order to improve the quality of medical care for patients with HH, it is necessary to develop and implement domestic clinical recommendations, as well as the development and implementation of educational programs for interested specialists.