Transition of Patients With Sickle Cell Disease From Pediatric to Adult Care: Assessing Patient Readiness
Transition of Patients With Sickle Cell Disease From Pediatric to Adult Care: Assessing Patient Readiness
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DOI：
10.1002/pbc.21974
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发表时间：
2009-07-01
影响因子：
3.2
通讯作者：
Minniti, Caterina P.
中科院分区：
文献类型：
--
作者：
McPherson, Marianne;Thaniel, Lisa;Minniti, Caterina P.
背景资料。对于患有镰状细胞病(SCD)的青少年来说，将护理从儿科转移到成人服务提供者是具有挑战性的。过渡计划的必要性是众所周知的，然而许多SCD患者在没有充分准备的情况下离开了儿科护理。这项研究有两个目的：评估青少年SCD患者对过渡的准备情况，并确定预测患者准备情况的变量。程序。在儿科SCD中心接受护理的青少年患者接受了关于过渡过程基本步骤的调查。患者的先前想法、兴趣、预期困难和对过渡重要性的感知程度从0到3分。对个人过渡计划的了解从0到4分。根据年龄、性别和疾病严重程度分析反应。结果。对70名年龄在14到20岁(中位数为16.7岁)的患者进行了评估。平均准备分数较低，最大的缺陷是先前思想(平均0.88[0.66-1.09])、知识(平均0.85[0.61-1.09])、预期难度(平均1.42[1.231-1.61])和兴趣(平均1.71[1.47-1.95])。对转型重要性的认知得分最高(平均值为2.71[2.58~2.84])。年龄较小(=3次/年)与较低的兴趣(P=0.043)和较大的预期难度(P=0.001)相关。女性的预期难度更高(P=0.028)。结论。患有SCD的青少年承认这一重要性，但表现出对过渡到成人导向护理的准备不足。准备程度随着年龄的增长而提高，但仍然不够。这一分析强调了改进青春期过渡的预期指导的必要性。儿科血癌杂志2009；52：838-841。(C)2009年Wiley-Liss，Inc.
Background. Transfer of care from pediatric to adult-oriented providers is challenging for adolescents with sickle cell disease (SCD). The need for transition programs is known, however many SCD patients leave pediatric care without adequate preparation. This Study has two aims: to assess adolescent SCD patients' preparation for transition and to identify variables that predict patient readiness. Procedure. Adolescent patients receiving care at a pediatric SCD center received a survey regarding essential steps of the transition process. Patients' level of prior thought, interest, anticipated difficulty, and perceived importance of transition were graded on a scale of 0 to 3. Knowledge of individual transition plans was scaled 0 to 4. Responses were analyzed according to age, sex, and disease severity. Results. Seventy patients ages 14 to 20 years (median 16.7 years) were assessed. Mean readiness scores were low, with greatest deficiencies in prior thought (mean 0.88 [0.66-1.09]), knowledge (mean 0.85 [0.61-1.09]), anticipated difficulty (mean 1.42 [1.231-1.61]), and interest (mean 1.71 [1.47-1.95]). Perceived importance of transition received the highest score (mean 2.71 [2.58-2.84]). Younger age (= 3 crises/year) was associated with lower interest (P=0.043) but greater anticipated difficulty (P=0.001). Anticipated difficulty trended higher among females (P=0.028). Conclusions. Adolescents with SCD acknowledge the importance but demonstrate poor preparation for transition to adult-oriented care. Readiness improves with age but remains insufficient. This analysis highlights the need for improvements in anticipatory guidance for transition during adolescence. Pediatr Blood Cancer 2009;52:838-841. (C) 2009 Wiley-Liss, Inc.