A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services.
A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services.
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DOI：
10.1053/jpdn.2002.30930
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发表时间：
2002-02-01
期刊：
影响因子：
--
通讯作者：
Dorn, Louise
中科院分区：
文献类型：
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作者：
Wojciechowski, Elizabeth A;Hurtig, Anita;Dorn, Louise
患有SCD的青少年的预期寿命现在可以延长到成年期。因此，青少年转到成人护理。几乎没有经验证据表明转移是如何发生的，以及目前的做法如何运作。本研究的目的是获得一个数据库的经验，青少年/年轻的成年人与SCD转移到成人护理。我们评估了他们的治疗依从性，独立性，以及他们是否接受不间断的护理。通过患者和提供者访谈和患者记录审查获得数据。结果表明，患者离开儿科护理没有充分的转移准备和准备转移的主要考虑因素，在决定转移，后续往往停止一旦患者离开儿科护理，谁保持后续预约的患者更有效地管理他们的疾病（自我效能）。一个结构化的过渡过程的模型提供了建议，为护士个案经理，以保持后续行动。
Life expectancy for adolescents with SCD now extends well into adulthood. As a result, adolescents transfer to adult care. Little empirical evidence exists to show how transfer occurs and how well the current practices now work. The aim of this study was to obtain a database on the experience of adolescents/young adults with SCD that transfer to adult care. We assessed their treatment compliance, independence, and whether they receive uninterrupted care. Data were obtained through patient and provider interviews and patient record reviews. Results indicate patients leave pediatric care without adequate transfer preparation and readiness to transfer is not the major consideration in the decision to transfer, follow-up often ceases once the patients leave pediatric care, and patients who maintain follow-up appointments are more efficient in managing their illness (self-efficacy). The model for a structured transitioning process is provided with recommendations for nurse case managers to maintain follow-up.