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

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.