Williams Courtney P, Smith Catherine H, Osborn Kristen, Bemrich-Stolz Christina J, Hilliard Lee M, Howard Thomas H, Lebensburger Jeffrey D
*Division of Pediatric Hematology Oncology †Lister Hill Library of Health Sciences, University of Alabama at Birmingham, Birmingham, AL.
J Pediatr Hematol Oncol. 2015 Jan;37(1):43-7. doi: 10.1097/MPH.0000000000000169.
It is vital to engage patients with sickle cell disease (SCD) in the transition process from pediatric to adult care. To better understand the patient perspective during the time of transition, we conducted this research with the goal of incorporating patient comprehension and desires for transition education.
We surveyed 37 adolescent patients with SCD about their understanding of SCD and transition education preferences. In addition, patient responses were analyzed to understand differences among urban and rural patients.
The mean age of surveyed participants was 14.9 years (SD=2.1). Forty-three percent of participants responded that the topic of transition had been introduced to them, and only 21% responded that they received education about transition. Despite the poor awareness about transition, almost all participants were interested in learning more about the transition process through a technology-based transition education platform where individual health topics could be explored.
Despite a didactic teaching approach to transition education, we identified that sickle cell participants had poor recognition of receiving transition education and poor understanding of their basic medical history. However, patients can identify specific health topics that should be addressed during an individualized transition education program.
让镰状细胞病（SCD）患者参与从儿科护理向成人护理的过渡过程至关重要。为了更好地了解过渡期间患者的观点，我们开展了这项研究，目的是纳入患者对过渡教育的理解和期望。
我们对37名患有SCD的青少年患者进行了调查，了解他们对SCD的理解以及过渡教育偏好。此外，对患者的回答进行了分析，以了解城乡患者之间的差异。
被调查参与者的平均年龄为14.9岁（标准差=2.1）。43%的参与者表示过渡话题已向他们介绍过，只有21%的参与者表示接受过过渡教育。尽管对过渡的认知度较低，但几乎所有参与者都有兴趣通过一个基于技术的过渡教育平台了解更多过渡过程，在该平台上可以探索各个健康主题。
尽管采用了说教式的过渡教育方法，但我们发现镰状细胞病患者对接受过渡教育的认知度较低，对自己的基本病史了解也不足。然而，患者能够确定在个性化过渡教育计划中应涉及的具体健康主题。
