Quality of Life in Pediatric Inflammatory Bowel Disease

小儿炎症性肠病的生活质量

• 批准号: 6560810
• 负责人: JAMES M PERRIN
• 金额: $ 17.3万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-01-01 至 2004-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6560810
• 关键词: Crohn's disease; adolescence (12-20); age difference; behavioral /social science research tag; clinical research; disease /disorder onset; gender difference; human subject; inflammatory bowel diseases; middle childhood (6-11); quality of life; questionnaires; social adjustment; socioeconomics; ulcerative colitis

DESCRIPTION (provided by applicant): Measurement of the quality of life (QoL) of children and adolescents with inflammatory bowel diseases (IBD) has had little attention, despite the importance of understanding key factors affecting QoL, especially for measuring the effects of clinical trials to improve IBD outcomes. The main purpose of this pilot study is to examine the impact of clinical severity and treatment social factors on the quality of life (QoL) of a diverse population of children and adolescents with inflammatory bowel disease (IBD). Secondary purposes include determining the effects of sociodemographic factors on QoL and exploring the concordance of views of parents and children of QoL. The study aims are to 1) determine the associations of of clinical characteristics (condition type, activity/severity, and treatment) with specific components of general health-related quality of life and IBD-specific QoL; 2) describe the effects of sociodemographic characteristics (SES, age, and gender) on these measures; and 3) compare the views of different observers (parent and child with IBD) of the child's QoL. The study will apply both general and condition-specific QoL measures among a random sample of 250 children and adolescents with IBD, ages 5-18 years, in six clinical sites. We will obtain measures of QoL from both the child and a parent in each case. The study will obtain additional data regarding the subjects' clinical condition (condition type, severity/activity, treatment [including surgery], age of onset) and socioeconomic status (household structure and income). Main analyses will compare general and specific measures of QoL and examine the influence of clinical and sociodemographic variables on QoL, through multivariate regression techniques. We will also examine the differences in child and parent assessments of QoL. The information from this study will provide a stronger base for future studies of treatment and natural history of IBD. It will help to clarify the life domains that are affected by IBD and will inform interventions to improve QoL for children with IBD.

描述（由申请人提供）： 炎症性肠病（IBD）儿童和青少年的生活质量（QoL）的测量很少受到关注，尽管了解影响QoL的关键因素非常重要，特别是对于测量临床试验改善IBD结局的效果。这项初步研究的主要目的是检查临床严重程度和治疗社会因素对不同人群的炎症性肠病（IBD）儿童和青少年生活质量（QoL）的影响。次要目的包括确定社会人口因素对生活质量的影响，并探讨父母和儿童生活质量的一致性。 本研究的目的是：1）确定临床特征（疾病类型、活动/严重程度和治疗）与一般健康相关生活质量和IBD特异性QoL的特定组成部分的相关性; 2）描述社会人口学特征（SES、年龄和性别）对这些指标的影响; 3）比较不同观察者（父母和IBD儿童）对儿童QoL的看法。该研究将在6个临床研究中心随机抽取250名5-18岁IBD儿童和青少年，采用一般和特定条件的QoL指标。在每种情况下，我们将从儿童和父母那里获得生活质量指标。本研究将获得关于受试者临床状况（疾病类型、严重程度/活动、治疗[包括手术]、发病年龄）和社会经济状况（家庭结构和收入）的其他数据。主要分析将通过多变量回归技术比较QoL的一般和特定指标，并检查临床和社会人口统计学变量对QoL的影响。我们还将研究儿童和父母的生活质量评估的差异。 本研究的信息将为IBD的治疗和自然史的未来研究提供更坚实的基础。它将有助于澄清IBD影响的生活领域，并为改善IBD儿童生活质量的干预措施提供信息。