Clinical manifestations and quality of life in hidradenitis suppurativa patients: survey of participants from an internet support group

Abstract: Background: Hidradenitis suppurativa is a complex and infrequent autoinflammatory disease that impacts on quality of life. Its pathogenesis is not fully understood, which limits the development of curative treatments. Objectives: To evaluate clinical and quality of life aspects of hidradenitis suppurativa patients from a social group on the Internet. Methods: A cross-sectional, Internet-based survey study among participants in a discussion group (Facebook) of individuals with hidradenitis suppurativa. Patients were asked to answer a questionnaire about clinical-demographic aspects and quality of life (DLQI-BRA). Results: A total of 390 individuals agreed to participate in the study, 82% of them female, median age (p25-p75), of 31 (25-37) years old, disease onset at 15 (13-23) years, family member affected in 20% of cases, overweight (BMI 29 [25-33]) kg/m2 and severe impact on quality of life (DLQI 20 [13-25]). Regarding Hurley's classification, the participants provided information that enabled classification into: I (19%), II (52%) and III (29%). More severe cases were associated with males (OR = 1.69), higher weight (BMI: OR = 1.03) non-white color (OR = 1.43) and higher frequency of other autoinflammatory diseases (OR = 1.37). Study limitations: Voluntary adherence survey with self-completion of the questionnaire by 390 from about 1600 group members. Conclusions: Hidradenitis suppurativa patients who participated in a social network group had onset of the disease after puberty, with a predominance in females and overweight people, with great impact on the quality of life.

Hidrosadenitis supurativa glútea y perianal: tratamiento quirúrgico / Perianal and gluteal suppurativa hidradenitis: surgical treatment

Introducción: La hidrosadenitis supurada (HS) es una enfermedad inflamatoria crónica que compromete las glándulas sudoríparas apócrinas, comenzando por la oclusión de los folículos pilosos. Puede localizarse en axilas, ingle, periné, periano y glúteos. Fue descripta en 1.839, es infrecuente y afecta a1 c/300-600 adultos. De acuerdo a sus características y estadio puede ser tratada médicamente o en forma quirúrgica. Objetivo: Comunicación del tratamiento quirúrgico realizado a pacientes portadores de HS localizada en la región glútea y perianal. Diseño: Trabajo descriptivo, retrospectivo y multicéntrico. Lugar de aplicación: Hosp. Santa María Magdalena de Magdalena, Hosp. HIGA San Martin de La Plata y práctica privada. Pacientes y métodos: Se analizan los resultados del tratamiento quirúrgico realizado a 7 pacientes que fueron tratados entre los años 2001 y 2011, que presentaban HS supurada glútea y perianal, con una edad promedio de 35,4 y un rango de 23 a 56. Cuatro de ellos con estadio II de Hurley a los cuales se les realizó marsupialización y drenaje y 3 con estadio III extirpación e injertos diferidos con piel del mismo paciente y una variante de injerto de piel porcina liofilizada que aceleró el tiempo de regeneración. Resultados: No se observó enfermedad de Crohn o carcinoma de células escamosas. De los 4 que fueron tratados con marsupialización, 2 evolucionaron favorablemente y fueron controlados durante 3 y 6 años respectivamente. El resto de ellos tuvieron recidivas a los 4 y 8 meses respectivamente, siendo tratados de la misma forma. Solamente 1 permanece en control desde hace tres años. Los 3 con extirpaciones e injertos diferidos son controlados en la actualidad sin presentar nuevas alteraciones, con un periodo de evolución de 5, 3 y 2 años respectivamente. No se realizaron colostomías de derivación. Conclusiones: Los métodos conservadores de tratamiento tienen poco efecto cuando la HS glútea y perianal es extensa...

Introduction: The hidrosadenitis suppurativa (HS) is a chronic inflammatory disease that affects the apocrine sweat glands. This condition occludes the hair follicles and it can be found in the armpits, the groin, the perineum, the perianal area and the gluteus. It was first described in 1839 and it is a rare disease that affects 1 among 300-600 adults. Due to the stage and the features of the disease, it can be treated either with medication or with surgery. Purpose: The aim of this study is to report the surgical treatment carried out on patients suffering from HS in the perianal area and the gluteus. Layout: This is a descriptive, retrospective and multicentre study. Place: This study was carried out in the 'Hospital Santa María Magdalena', Magdalena, in the 1 Hospital HIGA San Martín, La Plata and in private practice. Patients and Methods: The results of the surgical treatment carried out on 7 patients who suffered from HS in the perianal area and the gluteus during the years 2001 and 2011 are analyzed. Those patients were 23-56 years old on average 35.4. Marsupialization and drainage was carried out on 4 patients who were in Hurley stage II. Surgical excisions and skin grafts stage III with the patient's own skin and lyophilized pigskin that speeded the time of regeneration were done to 3 patients. Results: Crohn's Disease or squamous cell carcinoma was not observed. 2 of the 4 patients who were treated with marsupialization recovered favorably and they were monitored during 3 and 6 years. The rest of the patients had recurrences within a period of 4 and 8 months. Only 1 patient has still been monitored for the last three years. The 3 patients who had excisions and skin grafts are monitored at present and they do not show alterations within a period of evolution of 5,3 and 2 years. No colostomy was perfonned. Conclusion: The traditional methods do not show useful results when the HS in the perianal area and the gluteus is extensive...