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Clinical manifestations and quality of life in hidradenitis suppurativa patients: survey of participants from an internet support group
Tavora, Isabel Greco; Bissoli, Gabriela Cabral; Miot, Hélio Amante; Schmitt, Juliano Vilaverde.
  • Tavora, Isabel Greco; Universidade Estadual Paulista. Botucatu. BR
  • Bissoli, Gabriela Cabral; Universidade Estadual Paulista. Botucatu. BR
  • Miot, Hélio Amante; Universidade Estadual Paulista. Department of Dermatology and Radiotherapy. Botucatu. BR
  • Schmitt, Juliano Vilaverde; Universidade Estadual Paulista. Department of Dermatology and Radiotherapy. Botucatu. BR
An. bras. dermatol ; 94(3): 298-303, May-June 2019. tab, graf
Article in English | LILACS | ID: biblio-1011122
ABSTRACT
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.
Subject(s)


Full text: Available Index: LILACS (Americas) Main subject: Quality of Life / Hidradenitis Suppurativa / Community-Based Participatory Research / Social Media Type of study: Observational study / Prevalence study / Qualitative research / Risk factors Limits: Adult / Aged / Female / Humans / Male Language: English Journal: An. bras. dermatol Journal subject: Dermatology Year: 2019 Type: Article Affiliation country: Brazil Institution/Affiliation country: Universidade Estadual Paulista/BR

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Full text: Available Index: LILACS (Americas) Main subject: Quality of Life / Hidradenitis Suppurativa / Community-Based Participatory Research / Social Media Type of study: Observational study / Prevalence study / Qualitative research / Risk factors Limits: Adult / Aged / Female / Humans / Male Language: English Journal: An. bras. dermatol Journal subject: Dermatology Year: 2019 Type: Article Affiliation country: Brazil Institution/Affiliation country: Universidade Estadual Paulista/BR