肛门直肠畸形或先天性巨结肠成年患者生活质量改变的原因分析

作     者：Hartman E. E. Oort F.J. Visser M.R. 郑世成(译) 王顺涛(校) 

作者机构：Academic Medical Centre University of Amsterdam Building J4 P.O. Box 22660 1100 DDAmsterdam Netherlands 不详 

出 版 物：《世界核心医学期刊文摘（胃肠病学分册）》 (Core Journals in Gastroenterology)

年 卷 期：2006年第2卷第6期

页      面：22-22页

学科分类：0831[工学-生物医学工程（可授工学、理学、医学学位）] 1002[医学-临床医学] 100210[医学-外科学(含：普外、骨外、泌尿外、胸心外、神外、整形、烧伤、野战外)] 08[工学] 10[医学] 

主　　题：患者生活质量 先天性巨结肠 肛门直肠畸形 成年患者 原因分析 社会心理学 人口统计学 社会心理变量 疾病认知 老年女性患者 

摘      要：PURPOSE: The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung’s disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care. METHODS: Questionnaires were administered to 261 patients (77 percent),with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice. RESULTS: On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable “disease cognition“ most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung’s disease. CONCLUSIONS: Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients.