【摘要】： 目的 近年來大皰病患者的生活壓力事件和生活質量已引起廣泛關注。本研究評價天皰瘡、類天皰瘡患者生活質量,探討影響其生活質量相關因素,了解醫(yī)患雙方對疾病的認知情況。 方法 2009年6月—2009年12月復旦大學附屬華山醫(yī)院病房和門診經組織病理和免疫學確診的自身免疫性大皰病84例,其中天皰瘡組(n=44例)和類天皰瘡組(n=40例),另設立尋常型銀屑病為對照組(n=70例)。對大皰組患者進行疾病評估。經患者知情簽字同意,給予世界衛(wèi)生組織生活質量測定量表簡表(WHOQOL-BREF)、皮膚病生活質量指數表(DLQI)、簡明健康調查問卷(SF-36)和醫(yī)患雙方對疾病的認知情況問卷進行橫斷面調查。采用Stata10.0統計軟件進行分析。采用t檢驗和Wilcoxon秩和檢驗。兩變量間關聯用Pearsonχ2檢驗。P0.05有統計學意義。 結果 WHOQOL-BREF比較,大皰組得分低于對照組,差異有統計學意義(P0.05)。在DLQI中,大皰組和對照組總分比較無統計學意義(P0.05)。在SF-36中,大皰組得分低于對照組,差異有統計學意義(P0.05)。以大皰病臨床特征區(qū)分進行SF-36比較,類天皰瘡組得分低于天皰瘡組,皮損累及皮膚粘膜組得分低于累及皮膚組,疾病重度組得分低于輕、中度組,有合并(或并發(fā))癥組得分低于無合并(或并發(fā))癥組,差異均有統計學意義(P值均0.05)。合并(或并發(fā))多種疾病組SF-36得分低于合并(或并發(fā))一種疾病組,差異有統計學意義(P0.05)。醫(yī)務人員對患者關于大皰病病情及激素副作用和服用激素期間應定期隨訪的檢查項目告知率較高(90%),患者定期隨訪檢查項目的依從性未知。 結論 1.天皰瘡與類天皰瘡患者較尋常型銀屑病患者的生活質量低； 2.疾病類型、皮損分布、病情嚴重度和有無合并(或并發(fā))癥是影響大皰病患者生活質量的主要因素； 3.多種合并(或并發(fā))癥對大皰病患者生活質量的影響較一種合并(或并發(fā))癥者更為顯著； 4.通過并發(fā)癥的預防或干預可改善大皰性疾病患者的生活質量。
[Abstract]:Objective in recent years, stress events and quality of life in patients with bullous disease have attracted wide attention. In this study, the quality of life of pemphigoid and pemphigoid patients was evaluated. Methods from June 2009 to December 2009, 84 cases of autoimmune bullous disease diagnosed by histopathology and immunology, including 44 cases of pemphigus (n = 44) and 40 cases of pemphigoid (n = 40), were collected from ward and outpatient department of Huashan Hospital affiliated to Fudan University. Another 70 cases of psoriasis vulgaris were established as control group (n = 70). The patients in bullous group were evaluated. With the informed consent of the patient, give the World Health Organization quality of Life inventory (WHOQOL-BREF), skin disease quality of life index table (DLQI), The Concise Health Survey questionnaire (SF-36) and the questionnaire on the cognition of disease between doctors and patients were carried out cross-sectional. Stata10.0 statistical software was used to analyze. T test and Wilcoxon rank sum test were used. The correlation between two variables was tested by Pearson 蠂 2 test. P0.05 had statistical significance. Results compared with WHOQOL-BREF, the score of bullous group was lower than that of control group, the difference was statistically significant (P 0.05). In DLQI, the total scores of bullous group and control group were not statistically significant (P0.05). In SF-36, the score of bullous group was lower than that of control group, the difference was statistically significant (P0.05). Compared with the clinical features of bullous disease, the score of pemphigoid group was lower than that of pemphigoid group, the score of skin lesion group was lower than that of skin involvement group, and the score of severe disease group was lower than that of mild and moderate group. The scores of the patients with combined (or complicated) disease were lower than those of the patients without complication (P < 0.05). The scores of SF-36 in patients with multiple diseases were significantly lower than those in patients with multiple diseases (P0.05). The notification rate of patients with bullous disease and hormone side effects and should be regularly followed up during hormone use was higher (90%), and the compliance of patients with regular follow-up examination items was unknown. Conclusion 1. The quality of life in patients with pemphigus and pemphigoid was lower than that in patients with psoriasis vulgaris. The type of disease, the distribution of lesions, the severity of the disease and the presence or absence of complications were the main factors affecting the quality of life of patients with bullous disease. The effect of multiple complications on the quality of life in patients with bullous disease was more significant than that in patients with one type of combined disease (or complicated). 4. The quality of life of patients with bullous disease can be improved by prevention or intervention of complications.
【學位授予單位】：復旦大學
【學位級別】：碩士
【學位授予年份】：2010
【分類號】：R758.66

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