Lewandowski Miłosz, Świerczewska Zuzanna, Barańska-Rybak Wioletta
Department of Dermatology, Venereology and Allergology, Faculty of Medicine, Medical University of Gdansk, Gdansk, Poland.
Postepy Dermatol Alergol. 2022 Dec;39(6):1157-1161. doi: 10.5114/ada.2022.117041. Epub 2022 Jun 8.
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.
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.
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.
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.
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.
化脓性汗腺炎(HS)是一种慢性复发性炎症性皮肤病,其特征为出现严重的疼痛性结节、脓肿和瘘管,最常见于腋窝、腹股沟、臀部和肛周区域的皮肤褶皱处。该疾病引起了许多研究人员的关注,然而,针对患者的经证实的信息仍然有限。
评估患有该疾病的患者对反向痤疮的基线知识,并评估作为手册的教育干预是否可以提高患者对自身疾病的了解。
本研究是在HS脸书支持小组上进行的横断面调查。受访者完成了一份匿名问卷,评估他们对反向痤疮的了解程度。1个月后,他们收到了一本手册。此后,患者完成了几乎相同的匿名问卷,以评估阅读手册后的知识状态。
我们在教育干预前招募了102名参与者(A组),干预后招募了30名参与者(B组)。绝大多数参与者(83.3%)对编写手册的想法给予了10分。在两组中,了解自身疾病严重程度的受访者的结果明显优于不了解的参与者。在广泛阅读手册后,更多患者将他们对HS总体知识的评估为“良好”。
我们的研究表明,患者对HS的了解仍然不足。手册等工具可能有助于传播专业知识并帮助患者了解他们的疾病。