Division of Gastroenterology, Hepatology & Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada.
Inflamm Bowel Dis. 2011 May;17(5):1131-7. doi: 10.1002/ibd.21464. Epub 2010 Nov 5.
In the transition from pediatric to adult care, patients are expected to increase their level of self-care. Knowledge of disease characteristics, medications, and resources is crucial. This study evaluated the knowledge of adolescents with inflammatory bowel disease (IBD) and their parents in four major domains: disease characteristics, treatments, medical history, and health services resources.
Patients age 14-18 years and their parents completed MyHealth Passport for IBD as a cross-sectional assessment of knowledge. Responses were evaluated for accuracy using medical records. The proportion of correct responses between patients/parents were compared.
In all, 78 patients (age 16.2 ± 1.2 years, IBD duration 3.6 ± 2.5 years), and 64 parents participated. Patients and parents were equally likely to answer questions correctly regarding disease characteristics and treatment, but not health services resources. Most patients accurately identified IBD classification and listed medications. Neither patients nor parents accurately identified disease location or previous investigation results. Parents more likely correctly named insurance provider (odds ratio [OR] 6.33, 95% confidence intervals [CI] 2.68-15.0), and pharmacy location (OR 18.5, 95% CI 4.6-76.8). Multivariate regression revealed that patients with IBD type unclassified were more likely to be aware of their diagnostic classification (OR 17.2, 95% CI 2.81-105.4 compared with Crohn's disease patients). Older patients were less likely to recall if they had a small bowel x-ray (OR 0.59, 95% CI 0.35-0.996).
Future educational interventions should target areas of weakness in adolescent knowledge, particularly health services resources. The MyHealth Passport for IBD (available freely online) could educate and instill independence in the transitioning adolescent.
在从儿科到成人护理的过渡中，患者需要提高自我护理水平。了解疾病特征、药物和资源至关重要。本研究评估了炎症性肠病 (IBD) 青少年及其父母在四个主要领域的知识：疾病特征、治疗、病史和健康服务资源。
年龄在 14-18 岁的患者及其父母使用 MyHealth Passport for IBD 进行横断面评估以了解知识。使用病历评估对回答的准确性。比较了患者/父母之间正确回答的比例。
共有 78 名患者（年龄 16.2 ± 1.2 岁，IBD 病程 3.6 ± 2.5 年）和 64 名父母参加了这项研究。患者和父母回答疾病特征和治疗相关问题的准确率相当，但在健康服务资源方面的准确率较低。大多数患者能够准确识别 IBD 分类并列出药物。患者和父母都不能准确识别疾病部位或既往检查结果。父母更有可能正确命名保险提供商（比值比 [OR] 6.33，95%置信区间 [CI] 2.68-15.0）和药房位置（OR 18.5，95% CI 4.6-76.8）。多变量回归显示，未分类的 IBD 类型患者更有可能了解自己的诊断分类（OR 17.2，95% CI 2.81-105.4 与克罗恩病患者相比）。年龄较大的患者更有可能忘记是否进行过小肠 X 光检查（OR 0.59，95% CI 0.35-0.996）。
未来的教育干预措施应针对青少年知识的薄弱环节，特别是健康服务资源。MyHealth Passport for IBD（可免费在线获取）可以对过渡中的青少年进行教育并培养其独立性。
