PDF(Pubmed)
Abstract：
OBJECTIVE: Adolescents with chronic rheumatic disease must increasingly take on more responsibility for disease management from parents as they transition from pediatric to adult care. Yet, there are limited resources to inform and support parents about transition. Here, we evaluate the impact of a Transition Toolkit, geared towards parents and adolescents, on transition readiness, and explore the potential impact of parent-adolescent communication.
METHODS: A prospective cohort study of youths aged 14-18 years old and their parents was performed. Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected at enrollment (when the Transition Toolkit was shared with adolescents and their parents. Generalized estimating equation (GEE) analyses determined the influence of the Toolkit on transition readiness and explored the role of parent-adolescent communication quality. Subgroup analyses were conducted by sex.
RESULTS: A total of 21 patients were included; 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared (β = 7.8, p < 0.05, and β = 15.5, p < 0.05, respectively).
CONCLUSIONS: Transition readiness improved at each follow-up, the greatest increase was seen after the Toolkit was shared. Parent-adolescent communication quality did not appear to impact changes in transition readiness.
METHODS: A prospective cohort study of youths aged 14-18 years old and their parents was performed. Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected at enrollment (when the Transition Toolkit was shared with adolescents and their parents. Generalized estimating equation (GEE) analyses determined the influence of the Toolkit on transition readiness and explored the role of parent-adolescent communication quality. Subgroup analyses were conducted by sex.
RESULTS: A total of 21 patients were included; 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared (β = 7.8, p < 0.05, and β = 15.5, p < 0.05, respectively).
CONCLUSIONS: Transition readiness improved at each follow-up, the greatest increase was seen after the Toolkit was shared. Parent-adolescent communication quality did not appear to impact changes in transition readiness.
摘要：
目的：患有慢性风湿性疾病的青少年在从儿童护理过渡到成人护理时，必须越来越多地承担父母对疾病管理的责任。然而，通知和支持父母过渡的资源有限。这里,我们评估过渡工具包的影响，面向父母和青少年，关于过渡准备，并探讨父母与青少年沟通的潜在影响。
方法：对14-18岁青少年及其父母进行前瞻性队列研究。参与者的人口统计，疾病特征，过渡准备分数(Transition-Q，最大100)，和父母与青少年的沟通得分(PACS，最大100)是在登记时收集的(当与青少年及其父母共享过渡工具包时.广义估计方程（GEE）分析确定了工具包对过渡准备的影响，并探讨了父母与青少年沟通质量的作用。按性别进行亚组分析。
结果：共纳入21例患者；19例完成1例干预后Transition-Q，16例完成2例。Transition-Q分数随着时间的推移而增加，并且在共享工具包后增加了一倍（分别为β=7.8，p<0.05和β=15.5，p<0.05）。
结论：每次随访的过渡准备都得到了改善，最大的增长是在共享工具包后看到的。父母与青少年的沟通质量似乎并未影响过渡准备的变化。
方法：对14-18岁青少年及其父母进行前瞻性队列研究。参与者的人口统计，疾病特征，过渡准备分数(Transition-Q，最大100)，和父母与青少年的沟通得分(PACS，最大100)是在登记时收集的(当与青少年及其父母共享过渡工具包时.广义估计方程（GEE）分析确定了工具包对过渡准备的影响，并探讨了父母与青少年沟通质量的作用。按性别进行亚组分析。
结果：共纳入21例患者；19例完成1例干预后Transition-Q，16例完成2例。Transition-Q分数随着时间的推移而增加，并且在共享工具包后增加了一倍（分别为β=7.8，p<0.05和β=15.5，p<0.05）。
结论：每次随访的过渡准备都得到了改善，最大的增长是在共享工具包后看到的。父母与青少年的沟通质量似乎并未影响过渡准备的变化。
