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青少年特发性关节炎患者短期过渡项目的临床影响:DON'T RETARD 项目的结果。

The clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: results of the DON'T RETARD project.

机构信息

Centre for Health Services and Nursing Research, Department of Public Health, KU Leuven, Belgium.

Centre for Health Services and Nursing Research, Department of Public Health, KU Leuven, Belgium, The Heart Centre, Copenhagen University Hospital, Copenhagen, Denmark, Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden,

出版信息

Rheumatology (Oxford). 2016 Jan;55(1):133-42. doi: 10.1093/rheumatology/kev284. Epub 2015 Aug 28.

DOI:10.1093/rheumatology/kev284
PMID:26320142
Abstract

OBJECTIVE

To investigate the clinical impact of a brief transition programme for young people with JIA.

METHODS

The Devices for Optimization of Transfer and Transition of Adolescents with Rheumatic Disorders (DON'T RETARD) project is a mixed method project in which we first conducted a quasi-experimental study employing a one-group pre-test-post-test with a non-equivalent post-test-only comparison group design. In this quantitative study, we investigated clinical outcomes in patients with JIA and their parents who participated in the transition programme (longitudinal analyses). The post-test scores of this intervention group were compared with those of patients who received usual care (comparative analyses). Second, a qualitative study was conducted to explore the experiences of adolescents with JIA and their parents regarding their participation in the transition programme.

RESULTS

The primary hypothesis of improved physical (effect size 0.11), psychosocial (effect size 0.46) and rheumatic-specific health status (effect size ranging from 0.21 to 0.33), was confirmed. With respect to the secondary outcomes, improved quality of life (effect size 0.51) and an optimized parenting climate (effect size ranging from 0.21 to 0.28) were observed. No effect was measured in medication adherence (odds ratio 1.46).

CONCLUSION

Implementation of a transition programme as a brief intervention can improve the perceived health and quality of life of adolescents with JIA during the transition process, as well as the parenting behaviours of their parents. Based on the present study, a randomized controlled trial can be designed to evaluate the effectiveness of the transition programme.

摘要

目的

研究青少年特发性关节炎(JIA)患者短期过渡方案的临床影响。

方法

Devices for Optimization of Transfer and Transition of Adolescents with Rheumatic Disorders(DON'T RETARD)项目是一个混合方法项目,我们首先进行了一项准实验研究,采用单组前测-后测与非等效后测仅比较组设计。在这项定量研究中,我们调查了参加过渡计划的 JIA 患者及其父母的临床结果(纵向分析)。该干预组的后测分数与接受常规护理的患者(对比分析)的分数进行了比较。其次,进行了一项定性研究,以探讨青少年特发性关节炎患者及其父母对参与过渡计划的体验。

结果

证实了改善身体(效应量 0.11)、心理社会(效应量 0.46)和风湿特异性健康状况(效应量范围为 0.21 至 0.33)的主要假设。在次要结果方面,观察到生活质量(效应量 0.51)和优化养育环境(效应量范围为 0.21 至 0.28)得到改善。未测量到药物依从性的改善(优势比 1.46)。

结论

作为一项简短干预措施,实施过渡计划可以改善青少年特发性关节炎患者在过渡过程中的感知健康和生活质量,以及其父母的养育行为。基于本研究,可以设计一项随机对照试验来评估过渡计划的有效性。

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