The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis
The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis
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DOI：
10.1093/rheumatology/kel198
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发表时间：
2007-01-01
期刊：
影响因子：
5.5
通讯作者：
Shaw, K. L.
中科院分区：
文献类型：
--
作者：
McDonagh, J. E.;Southwood, T. R.;Shaw, K. L.
Objective.有一个广泛的证据基础，需要过渡性护理，但缺乏可靠的结果数据。本研究的目的是确定青少年特发性关节炎（JIA）的生活质量是否可以通过协调的，循证的过渡期护理计划得到改善。从英国的10个风湿病中心招募了11岁、14岁和17岁的JIA青少年及其父母。在基线、6个月和12个月收集数据，包括核心结局变量。主要结果指标为健康相关生活质量（HRQL）：青少年关节炎生活质量问卷（JAQQ）。次要结果指标包括：知识，满意度，独立的健康行为和职前经验。在359个被邀请参加的家庭中，308个（86%）青少年和303个（84%）父母接受了。五分之一的人患有持续性少关节炎。中位病程为5.7（0-16）年。与基线值相比，JAQQ评分在6个月和12个月时的青少年和父母评分有显著改善，大多数次要结局指标在6个月和12个月之间无显著恶化。观察到青少年和父母知识的持续改善，在12个月时，年轻组的改善明显更大（P = 0.002）。这项研究代表了第一个客观的评估，以证据为基础的过渡性护理计划，并表明，这种护理可能会提高青少年的HRQL。
Objective. There is an extensive evidence base for the need of transitional care, but a paucity of robust outcome data. The aim of the study was to determine whether the quality of life of adolescents with juvenile idiopathic arthritis (JIA) could be improved by a co-ordinated, evidence-based programme of transitional care.Methods. Adolescents with JIA aged 11, 14 and 17 yrs and their parents were recruited from 10 rheumatology centres in the UK. Data were collected at baseline, 6 and 12 months including core outcome variables. The primary outcome measure was health-related quality of life (HRQL): Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Secondary outcome measures included: knowledge, satisfaction, independent health behaviours and pre-vocational experience.Results. Of the 359 families invited to participate, 308 (86%) adolescents and 303 (84%) parents accepted. A fifth of them had persistent oligoarthritis. Median disease duration was 5.7 (0-16) yrs. Compared with baseline values, significant improvements in JAQQ scores were reported for adolescent and parent ratings at 6 and 12 months and for most secondary outcome measures with no significant deteriorations between 6 and 12 months. Continuous improvement was observed for both adolescent and parent knowledge with significantly greater improvement in the younger age groups at 12 months (P = 0.002).Conclusions. This study represents the first objective evaluation of an evidence-based transitional care programme and demonstrates that such care can potentially improve adolescents' HRQL.