Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia; Department of Pediatrics, The George Washington University Medical Center, Washington, District of Columbia.
Pediatr Blood Cancer. 2013 Dec;60(12):1946-51. doi: 10.1002/pbc.24704. Epub 2013 Jul 30.
The only available cure for sickle cell disease (SCD) is hematopoietic stem cell transplant (HSCT). One important barrier to HSCT in SCD is lack of patient and family knowledge.
To improve awareness of HSCT as a curative option for SCD, we hosted half-day educational symposia in 2011 and 2012. Symposia included didactic lectures by HSCT experts, small group sessions, and question and answer sessions with SCD patients and their families who had undergone HSCT. In 2011, we distributed anonymous pre- and post-symposium knowledge tests to determine how much attendees had learned about transplant. In 2012, we asked attendees to rate the importance of various medical and psychosocial factors in the decision to pursue HSCT.
Results from 2011 showed that knowledge about HSCT increased significantly after the symposium. Concern about the risk of transplant decreased slightly, but not significantly, following the symposium, and the majority of attendees expressed a desire to speak with physicians further about HSCT. In 2012, families reported that risk of death, prevention of SCD complications, and risk of serious complications were the most important considerations for their decisions about HSCT.
A half-day symposium for SCD patients and their families can increase knowledge about HSCT. Education about risks and benefits of HSCT is key, as families consider these medical factors to be most important to their decision to pursue transplant. Our symposia can be replicated across the country to increase knowledge about HSCT for SCD and impact the number of patients who pursue HSCT.
治疗镰状细胞病（SCD）唯一可用的方法是造血干细胞移植（HSCT）。HSCT 在 SCD 中面临的一个重要障碍是患者和家属缺乏相关知识。
为了提高对 HSCT 作为 SCD 治愈选择的认识，我们在 2011 年和 2012 年举办了为期半天的教育研讨会。研讨会包括 HSCT 专家的专题讲座、小组讨论以及接受过 HSCT 的 SCD 患者及其家属的问答环节。2011 年，我们在研讨会前后分发了匿名的知识测试，以确定与会者对移植的了解程度。2012 年，我们要求与会者对各种医疗和社会心理因素在决定进行 HSCT 中的重要性进行评分。
2011 年的结果表明，研讨会后，与会者对 HSCT 的了解显著增加。对移植风险的担忧略有下降，但无统计学意义，大多数与会者表示希望进一步与医生讨论 HSCT。2012 年，家属报告说，死亡风险、预防 SCD 并发症和严重并发症风险是他们决定是否进行 HSCT 的最重要考虑因素。
针对 SCD 患者及其家属的半天研讨会可以增加他们对 HSCT 的了解。HSCT 的风险和益处教育至关重要，因为家属认为这些医疗因素对他们决定是否进行移植具有最重要的意义。我们的研讨会可以在全国范围内复制，以提高对 SCD 中 HSCT 的认识，并影响追求 HSCT 的患者人数。
