Whitfield Emily P, Fredericks Emily M, Eder Sally J, Shpeen Benjamin H, Adler Jeremy
*Division of Pediatric Gastroenterology †Division of Child Behavioral Health ‡Child Health Evaluation and Research Unit, Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor.
J Pediatr Gastroenterol Nutr. 2015 Jan;60(1):36-41. doi: 10.1097/MPG.0000000000000555.
Transition may be associated with poor health outcomes, but limited data exist regarding inflammatory bowel disease (IBD). Acquisition of self-management skills is believed to be important to this process. IBD-specific checklists of such skills have been developed to aid in transition, but none has been well studied or validated. This study aimed to describe self-assessment ability to perform tasks on one of these checklists and to explore the relation between patient age and disease duration.
Patients ages 10 to 21 years with IBD were recruited. An iPad survey queried the patients for self-assessment of ability to perform specific self-management tasks. Task categories included basic knowledge of IBD, doctor visits, medications and other treatments, and disease management. Associations with age and disease duration were tested with Spearman rank correlation.
A total of 67 patients (31 boys) with Crohn disease (n = 40), ulcerative colitis (n = 25), and indeterminate colitis (n = 2) participated in the study. Mean patient age was 15.8 ± 2.5 years, with median disease duration of 5 years (2 months-14 years). The proportion of patients who self-reported ability to complete a task without help increased with age for most tasks, including "telling others my diagnosis" (ρ = 0.43, P = 0.003), "telling medical staff I do not like or am having trouble following a treatment" (ρ = 0.37, P = 0.003), and "naming my medications" (ρ = 0.28, P = 0.02). No task significantly improved with disease duration.
Self-assessment of ability to perform some key tasks of transition appears to improve with age, but not with disease duration. More important, communication with the medical team did not improve with age, despite being of critical importance to functioning within an adult care model.
病情转变可能与不良健康结局相关，但关于炎症性肠病（IBD）的数据有限。自我管理技能的获得被认为对这一过程很重要。已制定了针对IBD的此类技能清单以帮助病情转变，但尚无清单得到充分研究或验证。本研究旨在描述对其中一份清单上任务的自我评估能力，并探讨患者年龄与疾病持续时间之间的关系。
招募了年龄在10至21岁之间的IBD患者。通过iPad调查询问患者对执行特定自我管理任务能力的自我评估。任务类别包括IBD的基本知识、看医生、药物及其他治疗以及疾病管理。采用Spearman等级相关性检验年龄和疾病持续时间的相关性。
共有67例患者（31名男孩）参与研究，其中克罗恩病40例、溃疡性结肠炎25例、未定型结肠炎2例。患者平均年龄为15.8±2.5岁，疾病持续时间中位数为5年（2个月至14年）。对于大多数任务，自我报告能够在无帮助情况下完成任务的患者比例随年龄增加，包括“告诉他人我的诊断”（ρ = 0.43，P = 0.003）、“告诉医护人员我不喜欢或在遵循某种治疗方面有困难”（ρ = 0.37，P = 0.003）以及“说出我的药物名称”（ρ = 0.28，P = 0.02）。没有任务随疾病持续时间显著改善。
执行某些关键病情转变任务的自我评估能力似乎随年龄提高，但不随疾病持续时间提高。更重要的是，与医疗团队的沟通并未随年龄改善，尽管这对在成人护理模式下的功能发挥至关重要。
