Madrazo-Aguirre Katheryne, Ribeil Jean-Antoine, Sobota Amy E
Boston University Chobanian & Avedisian School of Medicine, Boston, MA.
Section of Hematology and Medical Oncology, Boston Medical Center, Center of Excellence in Sickle Cell Disease, Boston, MA.
Health Care Transit. 2024 Mar 15;2:100056. doi: 10.1016/j.hctj.2024.100056. eCollection 2024.
Transition in sickle cell disease (SCD) is associated with an alarming increase in acute care utilization, cost, and risk of early mortality. Effective transition preparation is crucial to address these issues. We established a multidisciplinary transition clinic at our urban SCD center in the fall of 2021. At each visit patients were introduced to the transition process and met with a pediatric and adult SCD provider.
We reviewed charts of patients attending the clinic from September 2021 to May 2023. Data were collected on the number of visits in the transition and adult SCD clinics. Clinic notes were reviewed, identifying the main topics of discussion, and examining patient attitudes and feelings towards transition.
Twenty-two patients aged 20-27 years with 35 total visits were included in the analysis. Eighteen (82%) patients had at least 1 visit to transition clinic. Out of 10 scheduled patients, 8 attended their first adult care visit within 2.4 months of their last transition visit. Medical topics brought up by patients included difficulty remembering to take hydroxyurea, questions about reproductive and menstrual health, and support pursing higher education with a chronic disease. Patients expressed a variety of feelings about transition from "no concerns" to "nervousness" and questioning "what to expect". Concerns were alleviated by learning about the process. One patient reported feeling "much better" after being introduced to the adult provider.
We demonstrated that a collaborative transition clinic prepares young adults with SCD for transition to adult care. Meeting with their adult SCD provider prior to transfer helped alleviate patients' concerns. Future work will involve tracking patients as they integrate into adult clinic.
镰状细胞病(SCD)的过渡阶段与急性护理利用率、成本以及早期死亡风险的惊人增加有关。有效的过渡准备对于解决这些问题至关重要。2021年秋季,我们在城市SCD中心设立了一个多学科过渡诊所。每次就诊时,患者都会了解过渡过程,并与儿科和成人SCD医疗服务提供者会面。
我们回顾了2021年9月至2023年5月在该诊所就诊的患者病历。收集了过渡诊所和成人SCD诊所的就诊次数数据。审查了诊所记录,确定了主要讨论主题,并检查了患者对过渡的态度和感受。
分析纳入了22名年龄在20 - 27岁之间、共就诊35次的患者。18名(82%)患者至少去过一次过渡诊所。在10名安排好就诊的患者中,8名在最后一次过渡就诊后的2.4个月内进行了首次成人护理就诊。患者提出的医疗主题包括难以记住服用羟基脲、关于生殖和月经健康的问题以及患有慢性病情况下追求高等教育的支持。患者对过渡表达了各种感受,从“没有担忧”到“紧张”,并质疑“会发生什么”。通过了解这个过程,担忧得到了缓解。一名患者在见到成人医疗服务提供者后表示感觉“好多了”。
我们证明了一个协作式过渡诊所能够帮助患有SCD的年轻人为向成人护理过渡做好准备。在转诊前与成人SCD医疗服务提供者会面有助于减轻患者的担忧。未来的工作将包括跟踪患者融入成人诊所的情况。