Department of Pediatrics, Division of Rheumatology & Immunology, University of California, San Francisco, 533 Parnassus, Rm U-127, Box 0107, San Francisco, CA 94143, USA.
Pediatr Rheumatol Online J. 2011 Dec 6;9(1):35. doi: 10.1186/1546-0096-9-35.
For adolescents with a diagnosis of lifelong chronic illness, mastery of self-management skills is a critical component of the transition to adult care. This study aims to examine self-reported medication adherence and self-care skills among adolescents with chronic rheumatic disease.
Cross-sectional survey of 52 adolescent patients in the Pediatric Rheumatology Clinic at UCSF. Outcome measures were self-reported medication adherence, medication regimen knowledge and independence in health care tasks. Predictors of self-management included age, disease perception, self-care agency, demographics and self-reported health status. Bivariate associations were assessed using the Student's t-test, Wilcoxon rank sum test and Fisher exact test as appropriate. Independence in self-management tasks were compared between subjects age 13-16 and 17-20 using the chi-squared test.
Subjects were age 13-20 years (mean 15.9); 79% were female. Diagnoses included juvenile idiopathic arthritis (44%), lupus (35%), and other rheumatic conditions (21%). Mean disease duration was 5.3 years (SD 4.0). Fifty four percent reported perfect adherence to medications, 40% reported 1-2 missed doses per week, and 6% reported missing 3 or more doses. The most common reason for missing medications was forgetfulness. Among health care tasks, there was an age-related increase in ability to fill prescriptions, schedule appointments, arrange transportation, ask questions of doctors, manage insurance, and recognize symptoms of illness. Ability to take medications as directed, keep a calendar of appointments, and maintain a personal medical file did not improve with age.
This study suggests that adolescents with chronic rheumatic disease may need additional support to achieve independence in self-management.
对于被诊断患有终身慢性疾病的青少年来说，掌握自我管理技能是过渡到成人护理的关键组成部分。本研究旨在检查患有慢性风湿性疾病的青少年的自我报告药物依从性和自我护理技能。
对 UCSF 儿科风湿病诊所的 52 名青少年患者进行横断面调查。结果测量指标包括自我报告的药物依从性、药物治疗方案知识和独立进行医疗保健任务的能力。自我管理的预测因素包括年龄、疾病认知、自我护理能力、人口统计学和自我报告的健康状况。使用学生 t 检验、Wilcoxon 秩和检验和 Fisher 精确检验评估了双变量关联，具体取决于情况。使用卡方检验比较了年龄在 13-16 岁和 17-20 岁之间的受试者在自我管理任务方面的独立性。
受试者年龄为 13-20 岁（平均 15.9 岁）；79%为女性。诊断包括幼年特发性关节炎（44%）、狼疮（35%）和其他风湿性疾病（21%）。平均疾病持续时间为 5.3 年（SD 4.0）。54%的人报告完全遵守药物治疗，40%的人报告每周漏服 1-2 次，6%的人报告漏服 3 次或更多次。忘记服药是最常见的漏服原因。在医疗保健任务中，随着年龄的增长，能够开处方、预约、安排交通、向医生提问、管理保险以及识别疾病症状的能力有所提高。但按指示服药、安排约会日历和维护个人医疗档案的能力并未随年龄增长而提高。
本研究表明，患有慢性风湿性疾病的青少年可能需要额外的支持，以实现自我管理的独立性。
