Fredericks E M, Lopez M J, Magee J C, Shieck V, Opipari-Arrigan L
Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI, USA.
Am J Transplant. 2007 Aug;7(8):1974-83. doi: 10.1111/j.1600-6143.2007.01878.x.
The present study empirically assessed the relationships between adherence behaviors and HRQOL, parent and child psychological functioning and family functioning, and investigated the relationship between adherence behaviors and health outcomes in children who were within 5 years of their liver transplantation. Participants included 38 children (mean = 8.5 years, range 28 months to 16 years) and their parent/guardian(s). HRQOL and psychological functioning were examined using well-validated assessment measures. Measures of adherence included the rate of clinic attendance and standard deviations (SDs) of consecutive tacrolimus blood levels, which were collected and evaluated retrospectively. Measures of child health status included the frequency of hospital admissions, liver biopsies, episodes of rejection and graft function for the year prior to study participation. Results indicated that nonadherence was related to lower physical HRQOL, more limitations in social and school activities related to emotional and behavioral problems, parental emotional distress and decreased family cohesion. Nonadherence was also related to frequency and duration of hospitalizations, liver biopsies and rejection episodes. These results suggest that empirically based assessment of HRQOL, parenting stress and family functioning may help identify patients at risk for nonadherence, and may allow for the need-based delivery of appropriate clinical interventions.
本研究通过实证评估了依从行为与健康相关生活质量、父母及儿童心理功能和家庭功能之间的关系，并调查了肝移植术后5年内儿童的依从行为与健康结局之间的关系。研究对象包括38名儿童（平均年龄8.5岁，范围为28个月至16岁）及其父母/监护人。使用经过充分验证的评估方法对健康相关生活质量和心理功能进行了检查。依从性的测量指标包括门诊就诊率和连续他克莫司血药浓度的标准差（SDs），这些数据通过回顾性收集和评估获得。儿童健康状况的测量指标包括研究参与前一年的住院频率、肝活检、排斥反应发作次数和移植肝功能。结果表明，不依从与较低的身体相关生活质量、与情绪和行为问题相关的社会和学校活动中更多的限制、父母的情绪困扰以及家庭凝聚力下降有关。不依从还与住院频率和时长、肝活检和排斥反应发作次数有关。这些结果表明，基于实证的健康相关生活质量、育儿压力和家庭功能评估可能有助于识别不依从风险患者，并可能根据需求提供适当的临床干预措施。
