Department of Dermatology, Roskilde Hospital, Faculty of Health Sciences, University of Copenhagen, Denmark.
Acta Derm Venereol. 2011 May;91(3):328-32. doi: 10.2340/00015555-1082.
Hidradenitis suppurativa influences patients' lives in many ways. It is therefore necessary to focus on the effects of the disease on daily life in order better to define patient-related outcomes in hidradenitis suppurativa studies. Interviews were conducted with 12 patients with hidradenitis suppurativa. Initial single interviews were followed by semi-structured and structured qualitative focus group interviews in order to improve the richness of the data and obtain in-depth understanding of the impact of the topics. Important topics were found to relate to aspects of interpersonal contact, especially in relation to smell and appearance, various emotional reactions, and feelings of lack of control. It was found that hidradenitis suppurativa has a great emotional impact on patients and promotes isolation due to fear of stigmatization. Shame and irritation are frequent and relate to smell, scars, itching and pain. Quality of life is adversely affected and professional support is needed.
化脓性汗腺炎在很多方面影响着患者的生活。因此，有必要关注疾病对日常生活的影响，以便在化脓性汗腺炎研究中更好地定义与患者相关的结果。对 12 名化脓性汗腺炎患者进行了访谈。最初进行了单独访谈，然后进行了半结构化和结构化的定性焦点小组访谈，以提高数据的丰富度，并深入了解这些主题的影响。发现重要的主题涉及人际关系的各个方面，特别是与气味和外表有关，还涉及各种情绪反应和失控感。研究发现化脓性汗腺炎对患者有很大的情绪影响，并由于害怕污名化而导致隔离。羞耻和恼怒很常见，与气味、疤痕、瘙痒和疼痛有关。生活质量受到影响，需要专业支持。
