Department of Molecular & Developmental Medicine, University of Siena, Italy.
J Prev Med Hyg. 2020 Oct 6;61(3):E374-E378. doi: 10.15167/2421-4248/jpmh2020.61.3.1450. eCollection 2020 Sep.
Ichthyoses include a heterogeneous group of skin diseases often characterized by persistent scaling and hyperkeratosis with variable erythema, pruritus, and sweating impairment. The aim of our review was to assess the quality of life in patients with ichthyosis.
In July 2018 we performed a systematic search in the electronic database PubMed (MEDLINE). The MESH term "quality of life" was combined, through the Boolean operator AND with the key word "ichthyosis". We considered eligible for the systematic review studies written in English.
The literature search yielded 63 publications, but 7 studies were included in the review. Studies were published in 2003-2014 and involved a minimum of 10 and a maximum of 235 patients. Authors used 5 types of tools: Dermatology Life Quality Index (DLQI), Dermatitis Family Impact Questionnaire (DFI), Nottingham Health Profile (NHP) questionnaire, Short Form Questionnaire 36 and 12 (SF-36, SF-12). Many patients reported worse scores than general population. Patients referred physical problems related to pain (which negatively influenced the mobility).
Ichthyosis considerably impaired the QoL, especially for paediatric patients. Further studies and efforts should be done to manage and treat the pain.
鱼鳞病包括一组异质性皮肤疾病,其特征通常为持续性鳞屑和角化过度,伴有不同程度的红斑、瘙痒和出汗功能障碍。我们评估鱼鳞病患者生活质量的目的。
2018 年 7 月,我们在电子数据库 PubMed(MEDLINE)中进行了系统检索。MESH 术语“生活质量”与关键词“鱼鳞病”通过布尔运算符 AND 进行组合。我们认为符合系统评价研究的标准是用英文撰写的研究。
文献检索得到 63 篇出版物,但只有 7 项研究被纳入综述。这些研究发表于 2003 年至 2014 年,涉及最少 10 名和最多 235 名患者。作者使用了 5 种工具:皮肤病生活质量指数(DLQI)、皮炎家庭影响问卷(DFI)、诺丁汉健康问卷(NHP)、短式 36 项健康调查量表(SF-36)和 12 项简式健康调查量表(SF-12)。许多患者报告的评分比一般人群差。患者提到与疼痛相关的身体问题(这对他们的行动能力产生负面影响)。
鱼鳞病极大地损害了生活质量,尤其是对儿科患者而言。应该进一步研究和努力管理和治疗疼痛。