Day Andrew S, Lemberg Daniel A, Nichol Alison, Clarkson Cathy, Otley Anthony R
School of Women's and Children's Health, University of New South Wales, Sydney, New South Wales, Australia; Department of Gastroenterology, Sydney Children's Hospital, Sydney, New South Wales, Australia; Department of Paediatrics, University of Otago, Christchurch, New Zealand.
J Paediatr Child Health. 2014 Aug;50(8):591-5. doi: 10.1111/jpc.12612. Epub 2014 Jun 3.
Disease knowledge may affect disease outcome, adherence to therapy and quality of life in inflammatory bowel disease (IBD). The IBD knowledge inventory device (IBD-KID) was specifically developed and validated for children to measure disease-specific knowledge. The relevance of the IBD-KID was now determined in an Australian population of children with IBD.
Twenty children with an established diagnosis of IBD for 2 years or greater, and their parents, were asked to complete the IBD-KID and the Crohn's and Colitis Knowledge Score (CCKNOW). Twenty children recently diagnosed with IBD completed the IBD-KID alone, as did three populations of health workers within a paediatric hospital.
Children with longstanding disease scored 12.1 ± 4.6 (from 23 questions) in the IBD-KID and 13.2 ± 5 (from 30 questions) in the CCKNOW device (P < 0.05). Children had fewer 'don't know' answers with the IBD-KID. Areas of poor knowledge included aspects of IBD therapies and IBD outcome. Recently diagnosed children performed less well than those with longer period of illness (P = 0.03). Parents scored more highly in both scores than their children (16.8 ± 2.7 and 18.1 ± 4.2: P = 0.008). Medical staff had higher scores in the IBD-KID (19.5 ± 2.1) than did nursing (13.2 ± 2.7) or clerical (7.3 ± 4.1) staff (P < 0.005).
The IBD-KID provides a reliable and appropriate assessment of disease knowledge in Australian children with IBD and can now be used in activities targeting disease-related education and as a tool to ascertain where knowledge can be improved in children with IBD.
疾病知识可能会影响炎症性肠病（IBD）的疾病结局、治疗依从性和生活质量。IBD知识量表（IBD-KID）是专门为儿童开发并验证的，用于测量疾病特异性知识。现确定IBD-KID在澳大利亚IBD儿童群体中的相关性。
20名确诊IBD达2年或更长时间的儿童及其父母被要求完成IBD-KID和克罗恩病与结肠炎知识评分（CCKNOW）。20名最近确诊IBD的儿童单独完成IBD-KID，一家儿科医院的三类医护人员也完成了该量表。
患有长期疾病的儿童在IBD-KID（共23个问题）中的得分为12.1±4.6，在CCKNOW量表（共30个问题）中的得分为13.2±5（P<0.05）。儿童在IBD-KID中“不知道”答案的情况较少。知识薄弱的领域包括IBD治疗和IBD结局方面。最近确诊的儿童表现不如患病时间较长的儿童（P=0.03）。父母在两个量表中的得分均高于其子女（分别为16.8±2.7和18.1±4.2：P=0.008）。医务人员在IBD-KID中的得分（19.5±2.1）高于护理人员（13.2±2.7）或文职人员（7.3±4.1）（P<0.005）。
IBD-KID为澳大利亚IBD儿童的疾病知识提供了可靠且合适的评估，现在可用于针对疾病相关教育的活动，并作为确定IBD儿童知识可改进之处的工具。
