与镰状细胞病一同成长：一项针对镰状细胞病青少年过渡项目的试点研究。
Growing up with sickle cell disease: a pilot study of a transition program for adolescents with sickle cell disease.
作者信息
Smith Grant M, Lewis Vivian R, Whitworth Elaine, Gold Deborah T, Thornburg Courtney D
机构信息
Trinity College, Duke University, Durham, NC, USA.
出版信息
J Pediatr Hematol Oncol. 2011 Jul;33(5):379-82. doi: 10.1097/MPH.0b013e318211bb2e.
We implemented the Duke Sickle Cell Disease (SCD) Transition Program for adolescents with SCD and investigated the knowledge about SCD; concerns and emotions about transitioning; and the initial impact of the Transition Program. Thirty-three adolescents participated in the initial study. Gaps in knowledge included ethnicities affected by SCD and inheritance of SCD. Adolescents were primarily concerned about transferring to a new medical team. There was a mix of both positive and negative emotions that varied over time. Overall, we have identified educational gaps and concerns and emotions about transitioning, which we will address through the Duke SCD Transition Program.
我们为患有镰状细胞病（SCD）的青少年实施了杜克大学镰状细胞病过渡项目，并调查了他们对SCD的了解；对过渡的担忧和情绪；以及过渡项目的初步影响。33名青少年参与了初步研究。知识方面的差距包括受SCD影响的种族和SCD的遗传。青少年主要担心转到新的医疗团队。随着时间的推移，情绪有积极的也有消极的，各不相同。总体而言，我们已经确定了教育方面的差距以及对过渡的担忧和情绪，我们将通过杜克大学SCD过渡项目来解决这些问题。
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