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本文引用的文献

1
Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000-2021: a systematic analysis from the Global Burden of Disease Study 2021.全球、区域和国家镰状细胞病的患病率和死亡负担,2000-2021 年:2021 年全球疾病负担研究的系统分析。
Lancet Haematol. 2023 Aug;10(8):e585-e599. doi: 10.1016/S2352-3026(23)00118-7. Epub 2023 Jun 15.
2
Assessing barriers and facilitators to transition in sickle cell disease care prior to implementation of a formalized program.在实施正式项目之前评估镰状细胞病护理过渡的障碍和促进因素。
Pediatr Blood Cancer. 2023 Apr;70(4):e30160. doi: 10.1002/pbc.30160. Epub 2023 Jan 8.
3
Incorporating gonadal health counseling into pediatric care of sickle cell patients.将性腺健康咨询纳入镰状细胞病患者的儿科护理中。
Hematology Am Soc Hematol Educ Program. 2022 Dec 9;2022(1):442-449. doi: 10.1182/hematology.2022000382.
4
Pediatric-Adult Care Transition: Perceptions of Adolescent and Young Adult Patients with Sickle Cell Disease and Their Healthcare Providers.儿科-成人护理过渡:镰状细胞病青少年及青年患者及其医疗服务提供者的看法
Patient Prefer Adherence. 2022 Oct 1;16:2727-2737. doi: 10.2147/PPA.S377236. eCollection 2022.
5
Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions.美国中西部城市中心镰状细胞病青少年和青年过渡期:障碍、促进因素及未来方向的多层次视角。
J Pediatr Hematol Oncol. 2022 Jul 1;44(5):e872-e880. doi: 10.1097/MPH.0000000000002322. Epub 2021 Sep 22.
6
Biopsychosocial factors related to transition among adolescents and young adults with sickle cell disease: A systematic review.与镰状细胞病青少年和青年过渡相关的生物心理社会因素:系统评价。
Crit Rev Oncol Hematol. 2021 Nov;167:103498. doi: 10.1016/j.critrevonc.2021.103498. Epub 2021 Oct 14.
7
Transition care continuity promotes long-term retention in adult care among young adults with sickle cell disease.过渡护理的连续性可促进镰状细胞病青年成年人在成人护理中的长期保留。
Pediatr Blood Cancer. 2021 Oct;68(10):e29209. doi: 10.1002/pbc.29209. Epub 2021 Jul 19.
8
Transition from a renal paediatric clinic to an adult clinic: Perspectives of adolescents and young adults, parents and health professionals.从儿科肾脏诊所过渡到成人诊所:青少年和年轻人、父母和卫生专业人员的观点。
J Child Health Care. 2022 Dec;26(4):531-547. doi: 10.1177/13674935211028410. Epub 2021 Jun 27.
9
A scoping review of transition interventions for young adults with sickle cell disease.镰状细胞病青年患者过渡期干预措施的范围综述
Pediatr Blood Cancer. 2021 Sep;68(9):e29135. doi: 10.1002/pbc.29135. Epub 2021 Jun 5.
10
Need and Feasibility of a Transition Clinic for Adolescents with Chronic Illness: A Qualitative Study.慢性病青少年过渡门诊的需求和可行性:定性研究。
Indian J Pediatr. 2020 Jun;87(6):421-426. doi: 10.1007/s12098-020-03189-z. Epub 2020 Feb 5.

镰状细胞病过渡诊所的初步成果。

Initial outcomes in a sickle cell disease transition clinic.

作者信息

Madrazo-Aguirre Katheryne, Ribeil Jean-Antoine, Sobota Amy E

机构信息

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.

出版信息

Health Care Transit. 2024 Mar 15;2:100056. doi: 10.1016/j.hctj.2024.100056. eCollection 2024.

DOI:10.1016/j.hctj.2024.100056
PMID:39712622
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11658431/
Abstract

BACKGROUND

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.

METHODS

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.

RESULTS

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.

CONCLUSION

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.

摘要

背景

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。

方法

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。

结果

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”。

结论

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。