Gånemo Agneta, Sjöden Per-Olow, Johansson Eva, Vahlquist Anders, Lindberg Magnus
Department of Medical Sciences, Section of Dermatology, Uppsala University, Sweden.
Eur J Dermatol. 2004 Jan-Feb;14(1):61-6.
Ichthyosis encompasses a heterogeneous group of hereditary skin disorders, which can be present at birth or develop in childhood. The aim of the present study was to investigate the Health related quality of life (HRQoL) of patients with ichthyosis. Two questionnaires (Dermatology Life Quality Index [DLQI], and the generic Short Form [SF] - 36) and a subjective measure of disease activity employing a visual analogue scale (VAS) were mailed to 144 patients. 122 patients aged 17-78 years responded. The median for DLQI was 5.0, which was significantly higher (worse) for Lamellar ichthyosis than for X-linked recessive ichthyosis. The SF-36 showed significantly lower (worse) scores for the study group in four of the eight dimensions compared to age- and gender-adjusted Swedish norm scores. No differences in SF-36 were found between men and women or between the different groups of ichthyosis. The results demonstrate that ichthyosis has an adverse effect on HRQoL.
鱼鳞病是一组遗传性皮肤病，具有异质性，可在出生时即存在或在儿童期发病。本研究的目的是调查鱼鳞病患者的健康相关生活质量（HRQoL）。向144名患者邮寄了两份问卷（皮肤病生活质量指数[DLQI]和通用简明健康调查问卷[SF]-36）以及一份采用视觉模拟量表（VAS）的疾病活动主观测量表。122名年龄在17至78岁之间的患者进行了回复。DLQI的中位数为5.0，其中板层状鱼鳞病患者的该数值显著高于（更差）X连锁隐性鱼鳞病患者。与年龄和性别调整后的瑞典常模分数相比，研究组在SF-36八个维度中的四个维度上得分显著更低（更差）。在SF-36方面，未发现男性与女性之间或不同类型鱼鳞病患者组之间存在差异。结果表明，鱼鳞病对健康相关生活质量有不利影响。
