Osunkwo Ifeyinwa, Lawrence Raymona, Robinson Myra, Patterson Charity, Symanowski James, Minniti Caterina, Bryant Paulette, Williams Justina, Eckman James, Desai Payal
Sickle Cell Disease Enterprise, Levine Cancer Institute, Atrium Health, Charlotte, NC, United States of America.
Jiann Ping Hsu College of Public Health, Georgia Southern University, Statesboro, GA, United States of America.
Contemp Clin Trials. 2023 Mar;126:107089. doi: 10.1016/j.cct.2023.107089. Epub 2023 Jan 18.
Emerging adults with sickle cell disease (EASCD) experience significant challenges transitioning from pediatric to adult care. Acute care utilization increases, quality of life (QOL) declines, with an increased risk of mortality. Currently, there are no practice standards to guide emerging adults through the transition process. We are creating a structured transition education (STE) based program for EASCD by customizing the Six Core Elements (6 CE) of Health Care Transition model and are evaluating the effectiveness of adding peer mentoring (PM).
The Sickle Cell Trevor Thompson Transition Project (ST3P-UP) is an ongoing multi-site, cluster randomized clinical trial with a target enrollment of 537 EASCD aged 16 to 25 years in pediatric care. Each site (n = 14) comprises a pediatric clinic, adult clinic, and a sickle cell disease (SCD) community-based organization (CBO). Sites are randomized 1:1 to either STE or STE + PM. EASCDs are followed prospectively for 24 months. Rapid cycle plan-do-study-act quality improvement (QI) methods are used to implement the STE. The primary objective is to compare the effectiveness of STE + PM versus STE only at decreasing the number of acute care visits per year over 24 months. The secondary objectives are to compare overall healthcare utilization and patient-reported QOL outcomes at 24 months.
We aim to demonstrate the feasibility of using a QI approach to implement 6 CE-based practice standards at 14 disparate SCD clinical programs to guide EASCD through the transition process. We hypothesize that adding PM to the STE program will improve acute care reliance, QOL, and satisfaction with transition outcomes.
患有镰状细胞病的青年成人（EASCD）在从儿科护理过渡到成人护理过程中面临重大挑战。急性护理利用率增加，生活质量（QOL）下降，死亡风险增加。目前，尚无实践标准来指导青年成人度过过渡阶段。我们正在通过定制医疗保健过渡模型的六个核心要素（6 CE），为EASCD创建一个基于结构化过渡教育（STE）的项目，并正在评估增加同伴指导（PM）的有效性。
镰状细胞特雷弗·汤普森过渡项目（ST3P-UP）是一项正在进行的多中心、整群随机临床试验，目标招募537名年龄在16至25岁、接受儿科护理的EASCD患者。每个地点（n = 14）包括一个儿科诊所、一个成人诊所和一个基于社区的镰状细胞病（SCD）组织（CBO）。各地点按1:1随机分为STE组或STE + PM组。对EASCD患者进行前瞻性随访24个月。采用快速循环计划-实施-研究-改进质量改进（QI）方法来实施STE。主要目标是比较STE + PM与仅STE在减少24个月内每年急性护理就诊次数方面的有效性。次要目标是比较24个月时的总体医疗保健利用率和患者报告的QOL结果。
我们旨在证明在14个不同的SCD临床项目中，采用QI方法实施基于6 CE的实践标准以指导EASCD度过过渡阶段的可行性。我们假设在STE项目中增加PM将改善对急性护理的依赖、QOL以及对过渡结果的满意度。
