摘要目的 了解银屑病患者的直接和间接经济负担、心理负担和生存质量.方法 于2018年7-9月,通过“银屑病病友互助网”、“银友互助平台”微信公众号和各地区病友微信群募集银屑病患者,采用自行设计的问卷和皮肤病生活质量指数(DLQI)量表进行在线调查.计数资料比较采用x2检验,计量资料比较采用Mann-Whitney U检验.结果 共回收497份有效问卷,募集银屑病患者497例,其中,轻中度组190例,重度组307例,覆盖我国8个地区,主要是华北和华东地区.患者因银屑病的年总支出占年总收入百分比[M(P25,P75)]为20％(8％,50％),年住院率为21.3％,年请假/缺勤天数为15.0(1.0,40.0)d,因银屑病导致的失业率为37.0％.443例(89.1％)因银屑病有精神压力,169例(34.0％)有过自杀倾向,23例(4.6％)曾实施过自杀行为.被调查者DLQI评分为14(8,19)分,307例(61.8％)生活质量受到重度及极重度影响(DLQI＞ 10,重度组),190例(38.2％)受到轻中度影响(0≤DLQI≤10,轻中度组).重度组年总支出占年总收入比例(30％)、住院率(26.4％)、年请假/缺勤天数(20.0)、失业率(47.9％)、有精神压力者比例(99.0％)、有自杀倾向者比例(46.3％)、曾实施自杀行为者比例(6.8％)均高于轻中度组(分别为10.0％、13.2％、5.5、19.5％、73.2％、14.2％、1.1％),且差异均有统计学意义(P＜0.01).结论 银屑病给患者带来较沉重的经济负担和心理负担,也降低了患者的生活质量;同时,生活质量受到重度及极重度影响的患者较生活质量受到轻中度影响的患者,疾病负担相对更重.

abstractsObjective To investigate direct and indirect economic burden,psychological impact,and quality of life in patients with psoriasis.Methods Patients with psoriasis were recruited nationwide from "the psoriasis patient mutual assistance network",a WeChat official account of "psoriasis patient mutual assistance platform",and WeChat groups of psoriasis patients in different regions between July and September in 2018.An internet-based online questionnaire survey was carried out on these patients by using a self-designed questionnaire and Dermatology Life Quality Index (DLQI) scale.Comparison of enumeration data was carried out by using chi-square test,and comparison of measurement data by using Mann-Whitney U test.Results A total of 497 valid questionnaires were collected,and 497 patients with psoriasis were enrolled into this survey,including 190 patients with mild to moderate psoriasis and 307 patients with severe psoriasis.These patients were from 8 geographic regions of China,and mainly in east China and north China.The total annual expenditure for psoriasis per patient accounted for 20％ (8％,50％) (M [P25,P75])of the total annual income,the annual hospitalization rate was 21.3％,the annual sick leave or absence duration was 15.0 (1.0,40.0) days,and the unemployment rate due to psoriasis was 37.0％.Of the 497 patients,443 (89.1％) suffered from mental stress due to psoriasis,169 (34.0％) had suicide intention,and 23 (4.6％) had ever attempted suicide.The DLQI score for all the patients was 14 (8,19),307 (61.8％) patients reported a severe or extremely severe impact on the quality of life (DLQI ＞ 10,severe psoriasis group),and 190 (38.2％) patients reported a mild or moderate impact on the quality of life (0 ≤ DLQI ≤ 10,mild to moderate psoriasis group).Compared with the mild to moderate psoriasis group,the severe psoriasis group showed a significantly higher ratio of total annual expenditure to total annual income (30％ vs.10.0％,P ＜ 0.01),hospitalization rate (26.4％ vs.13.2％,P ＜ 0.01),annual sick leave or absence duration (20.0 days vs.5.5 days,P ＜ O.01),unemployment rate (47.9％ vs.19.5％,P ＜ 0.01),proportion of patients with mental stress (99.0％ vs.73.2％,P ＜ 0.01),proportion of patients with suicide intention (46.3％ vs.14.2％,P ＜ 0.01) and proportion of patients who had suicide behavior (6.8％ vs.1.1％,P ＜ 0.01).Conclusions Psoriasis imposes heavy economic and psychological burden on patients,and decreases their quality of life.Meanwhile,patients with severely or extremely severely affected quality of life have higher disease burden compared with those with mildly to moderately affected quality of life.