Assessing barriers and facilitators to transition in sickle cell disease care prior to implementation of a formalized program.
Assessing barriers and facilitators to transition in sickle cell disease care prior to implementation of a formalized program.
复制标题
在实施正式计划之前评估镰状细胞病护理过渡的障碍和促进因素。
DOI：
10.1002/pbc.30160
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发表时间：
2023
影响因子：
3.2
通讯作者：
Kanter,Julie
中科院分区：
文献类型：
--
作者：
Sheppard,Sydney;Hellemann,Gerhard;Lebensburger,Jeffrey;Kanter,Julie
在美国，超过95%的儿童镰状细胞病（SCD）存活到成年。然而，过早死亡仍然是一个问题，特别是在18至35岁的人群中。年轻人死亡率增加的一个可能的解释是，在从高度连续的儿科医疗保健模式过渡到更加自力更生的成人医疗保健模式期间，参与护理的困难。本研究的目的是在形成正式的过渡项目之前，确定从儿童到成人SCD项目成功转移的潜在促进因素和障碍。这是一项回顾性队列研究，对在阿拉巴马大学伯明翰分校（UAB）镰状细胞诊所治疗的472例SCD（所有基因型）患者（18-24岁）的转归结果进行了研究。主要结果是患者是否继续在（任何）成人SCD项目中接受治疗（定义为至少在成人血液学/SCD诊所就诊一次）。188例（45%）过渡年龄患者成功转入成人护理。成功转院的促进因素包括在同一家医院接受儿科和成人项目治疗，具有HbSS基因型，和/或在转院时接受SCD修饰治疗（羟基脲和/或红细胞输血治疗）。最重要的是，许多未能转到成人诊所的患者在15岁之前失去了随访。重要的是，这些先前被标记为“过渡失败”的患者在过渡年龄之前就失去了随访。这部分人群需要尽早参与。
Over 95% of children with sickle cell disease (SCD) survive into adulthood in the United States. However, early mortality remains a problem, especially in persons between the ages of 18 and 35. One possible explanation for the increased mortality rate in young adults is difficulties in engaging in care during the transition from a heavily contiguous pediatric healthcare model to a more self‐reliant adult healthcare model. The goal of this study was to identify potential facilitators and barriers to a successful transfer in care from the pediatric to adult SCD program before the formation of a formal transition program. This is a retrospective cohort study of transition outcomes for 472 individuals with SCD (all genotypes) treated at the University of Alabama at Birmingham (UAB) sickle cell clinic (aged 18–24). The primary outcome was whether the patient continued care in (any) adult SCD program (defined as being seen at least once in an adult hematology/SCD clinic). One hundred eighty‐eight (45%) transition age patients successfully transferred to adult care. Facilitators to successful transfer in care included being treated at the same hospital for both pediatric and adult programs, having the genotype HbSS, and/or receiving an SCD‐modifying therapy at the time of transition (hydroxyurea and/or red cell transfusion therapy). Of primary interest, many of the patients who failed to transition to an adult clinic were lost to follow‐up prior to 15 years of age. Importantly, these patients who had previously been labeled as “transition failures,” were lost to follow‐up long before the transition age. Early engagement is needed for this population.