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首页> 外文期刊>Pediatrics: Official Publication of the American Academy of Pediatrics >Quaiity-of-Care Indicators for Children With Sickle Cell Disease
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Quaiity-of-Care Indicators for Children With Sickle Cell Disease

机译：镰状细胞病患儿的护理质量指标

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OBJECTIVE: To develop a set of quality-of-care indicators for the management of children with sickle cell disease (SCD) who are cared for in a variety of settings by addressing the broad spectrum of complications relevant to their illness. METHODS; We used the Rand/University of California Los Angeles appropriateness method, a modified Delphi method, to develop the indicators. The process included a comprehensive literature review with ratings of the evidence and 2 rounds of anonymous ratings by an expert panel (nominated by leaders of various US academic societies and the National Heart, Lung, and Blood Institute). The panelists met face-to-face to discuss each indicator in between the 2 rounds. RESULTS: The panel recommended 41 indicators that cover 18 topics; 17 indicators described routine health care maintenance, 15 described acute or subacute care, and 9 described chronic care. The panel identified 8 indicators most likely to have a large positive effect on improving quality of life and/or health outcomes for children with SCD, which covered 6 topics: timely assessment and treatment of pain and fever; comprehensive planning; penicillin prophylaxis; transfusion; and the transition to adult care. CONCLUSIONS: Children with SCD are at risk for serious morbidities and early mortality, yet efforts to assess and improve the quality of their care have been limited compared with other chronic childhood conditions. This set of 41 indicators can be used to assess quality of care and provide a starting point for quality-improvement efforts.
机译：目的：通过解决与疾病有关的各种并发症，制定一套护理质量指标，以管理在各种环境中受到照料的镰状细胞疾病（SCD）儿童。方法;我们使用兰德/加利福尼亚大学洛杉矶分校的适当性方法（一种改进的德尔菲方法）来开发指标。该过程包括对文献进行全面的文献综述，对证据进行评级，并由一个专家小组（由美国各学术协会和美国国家心脏，肺和血液研究所的领导人提名）进行两轮匿名评级。小组成员面对面面对面讨论在两个回合之间的每个指标。结果：专家小组推荐了涵盖18个主题的41个指标。 17项指标描述了日常医疗保健的维护，15项指标描述了急性或亚急性护理，9项指标描述了长期护理。专家组确定了8个最有可能对改善SCD儿童的生活质量和/或健康状况产生积极影响的指标，涉及6个主题：及时评估和治疗疼痛和发热;综合规划;预防青霉素;输血以及向成人护理的过渡。结论：患有SCD的儿童有发生严重疾病和早期死亡的风险，但是与其他慢性儿童期疾病相比，评估和改善其护理质量的努力受到限制。这套41项指标可用于评估护理质量，并为质量改进工作提供起点。

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