Introduction

Hidradenitis suppurativa (HS) is a chronic, recurrent inflammatory skin disease characterized by the occurrence of severe, painful nodules, abscesses, and fistulas, most commonly found in the skin folds of the axilla, groin, gluteal, and perianal areas. The disease is of interest to many researchers, however, verified information for patients is still limited.

Aim

To evaluate the baseline knowledge about acne inversa among patients suffering from the disease as well as to assess whether an educational intervention as a handbook can improve patients’ knowledge of their illness.

Material and methods

This research study was a cross-sectional survey conducted on HS Facebook support group. The respondents completed an anonymized questionnaire assessing their state of knowledge about acne inversa. After 1 month they were presented with a handbook. Thereafter the patients completed nearly the same anonymized questionnaire assessing the state of knowledge after reading the handbook.

Results

We enrolled 102 participants before (group A) and 30 participants after (group B) the educational intervention. The vast majority of the participants (83.3%) appraised the idea of preparing a handbook as 10 points. In both groups, respondents who were aware of their disease severity had significantly superior results than the participants who were not. After reading the handbook extensively, more patients assessed the state of their general HS knowledge as ‘good’ than before.

Conclusions

Our study demonstrated that knowledge about HS among patients is still insufficient. Tools such as handbooks may prove useful in disseminating expertise and helping patients to understand their disease.