Self-Management Measurement and Prediction of Clinical Outcomes in Pediatric Transplant
Self-Management Measurement and Prediction of Clinical Outcomes in Pediatric Transplant
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DOI：
10.1016/j.jpeds.2017.09.069
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发表时间：
2018-02-01
影响因子：
5.1
通讯作者：
Shemesh, Eyal
中科院分区：
文献类型：
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作者：
Annunziato, Rachel A.;Bucuvalas, John C.;Shemesh, Eyal
目的进一步完善自我管理的措施，责任和熟悉疾病调查（REFILS），并确定该评分是否预测药物依从性，从而减少小儿肝移植受体的同种异体移植排斥反应的情况。研究设计参与者为400名肝移植受体及其父母，招募了肝移植儿童药物依从性研究。来自5个美国儿科移植中心。在入组时对参与者（9-17岁）及其父母进行REFILS（n = 213个完成的二人组）。REFILS评分和计算患者与父母自我管理报告之间的差异评分用于预测药物水平变异指数（MLVI），这是一种药物依从性的测量方法（更高的MLVI =更多的药物水平的变异性）和中心病理学家诊断的排斥反应超过2年的随访结果当患者报告更多的自我管理，他们的依从性较低（MLVI较高，r = 0.26，P <0.01）。患者和父母报告之间的差异（患者比父母支持更高的水平）与较低的依从性相关（r = 0.20，P <0.01）。更大的病人报告的自我管理和更高的差异分数也预测reject.Conclusions，我们发现，当病人赞同更多的责任，他们的护理，临床结果更糟，这表明不分青红皂白地促进自我管理的青少年可能是不可取的。病人和家长的自我管理的看法之间的差异出现了一种新的策略，以衡量过渡到孩子的照顾责任所涉及的风险程度。
Objective To further refine a measure of self-management, the Responsibility and Familiarity with Illness Survey (REFILS), and to determine if this score predicts medication adherence and, thus, fewer instances of allograft rejection among pediatric liver transplant recipients.Study design Participants were 400 liver transplant recipients and their parents recruited for the Medication Adherence in Children Who Had a Liver Transplant study, from 5 US pediatric transplant centers. The REFILS was administered to participants (ages 9-17 years) and their parents at enrollment (n = 213 completed dyads). The REFILS scores, and a discrepancy score calculated between patient and parent report of the patient's self-management, were used to predict Medication Level Variability Index (MLVI), a measure of medication adherence (higher MLVI = more variability in medication levels) and central pathologist-diagnosed rejection over a 2-year follow-up.Results When patients reported greater self-management, their adherence was lower (higher MLVI, r = 0.26, P < .01). Discrepancies between patient and parent report (patients endorsing higher levels than parents) were associated with lower adherence (r = 0.20, P < .01). Greater patient-reported self-management and higher discrepancy scores also predicted rejection.Conclusions We found that when patients endorse more responsibility for their care, clinical outcomes are worse, indicating that indiscriminate promotion of self-management by adolescents may not be advisable. A discrepancy between patient and parent perception of self-management emerged as a novel strategy to gauge the degree of risk involved in transitioning care responsibilities to the child.