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镰状细胞病患者的新型临床护理模式。

Novel clinical care models for patients with sickle cell disease.

作者信息

Bartolucci Pablo

机构信息

Hôpital Henri Mondor AP-HP. UPEC, Créteil, France.

出版信息

Hematology Am Soc Hematol Educ Program. 2024 Dec 6;2024(1):618-622. doi: 10.1182/hematology.2024000586.

DOI:10.1182/hematology.2024000586
PMID:39644018
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11665723/
Abstract

This educational program outlines the importance of evolving clinical care models in response to increased life expectancy and variability in individual patient experiences, particularly in the context of sickle cell disease (SCD). It emphasizes the need for personalized and adaptive care models, in which the patient should play a central role, and the need for collaborative networks of physicians and caregivers, taking into account the multisystemic nature of the disease. The proposal also discusses the role of personalized medicine and technological advances, highlighting the need for a shared medical record; the balance between rare center expertise and widespread dissemination of knowledge; and the challenges in high- and low-income countries. It emphasizes the need to move toward personalized medicine, given the significant interindividual variability in both follow-up and treatment, and the introduction of more appropriate biomarkers and predictive algorithms to aid decision-making. The proposal includes real-world examples of successful adaptation in clinical care models. It concludes with a summary of the importance and benefits of evolving clinical care models and a future outlook on the evolution of clinical care in response to demographic changes. These proposals are intended to provide a comprehensive overview of the current state and future directions of clinical care models for SCD.

摘要

本教育项目概述了随着预期寿命的增加以及个体患者经历的差异,尤其是在镰状细胞病(SCD)背景下,不断发展临床护理模式的重要性。它强调了个性化和适应性护理模式的必要性,其中患者应发挥核心作用,以及医生和护理人员协作网络的必要性,同时考虑到该疾病的多系统性。该提案还讨论了个性化医疗和技术进步的作用,强调了共享病历的必要性;罕见中心专业知识与广泛知识传播之间的平衡;以及高收入和低收入国家面临的挑战。鉴于随访和治疗中存在显著的个体差异,以及引入更合适的生物标志物和预测算法以辅助决策,它强调了向个性化医疗发展的必要性。该提案包括临床护理模式成功适应的实际例子。它最后总结了不断发展临床护理模式的重要性和益处,以及应对人口变化的临床护理演变的未来展望。这些提案旨在全面概述SCD临床护理模式的现状和未来方向。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1f6a/11665723/2a08bf03655e/hem.2024000586_s1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1f6a/11665723/2a08bf03655e/hem.2024000586_s1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1f6a/11665723/2a08bf03655e/hem.2024000586_s1.jpg

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本文引用的文献

1
Atrial arrhythmia in adults with sickle cell anemia: a missing link toward understanding and preventing strokes.镰状细胞贫血成人的房性心律失常:理解和预防中风缺失的一环。
Blood Adv. 2024 Nov 12;8(21):5625-5638. doi: 10.1182/bloodadvances.2024013208.
2
Impact of hospitalized vaso-occlusive crises in the previous calendar year on mortality and complications in adults with sickle cell disease: a French population-based study.前一个日历年住院血管闭塞性危象对镰状细胞病成人患者死亡率和并发症的影响:一项基于法国人群的研究。
Lancet Reg Health Eur. 2024 Apr 6;40:100901. doi: 10.1016/j.lanepe.2024.100901. eCollection 2024 May.
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Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience.
镰状细胞病:将患者参与融入国际会议可以改变患者经验的作用。
Orphanet J Rare Dis. 2023 Nov 1;18(1):341. doi: 10.1186/s13023-023-02951-8.
4
Genetic Variation and Sickle Cell Disease Severity: A Systematic Review and Meta-Analysis.遗传变异与镰状细胞病严重程度:系统评价和荟萃分析。
JAMA Netw Open. 2023 Oct 2;6(10):e2337484. doi: 10.1001/jamanetworkopen.2023.37484.
5
Association of haemolysis markers, blood viscosity and microcirculation function with organ damage in sickle cell disease in sub-Saharan Africa (the BIOCADRE study).撒哈拉以南非洲地区镰状细胞病中溶血标志物、血液黏度和微循环功能与器官损伤的关联(BIOCADRE 研究)。
Br J Haematol. 2023 Oct;203(2):319-326. doi: 10.1111/bjh.19006. Epub 2023 Aug 15.
6
Defining global strategies to improve outcomes in sickle cell disease: a Lancet Haematology Commission.制定改善镰状细胞病结局的全球战略:柳叶刀血液学委员会。
Lancet Haematol. 2023 Aug;10(8):e633-e686. doi: 10.1016/S2352-3026(23)00096-0. Epub 2023 Jul 11.
7
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.
8
Long-term survival with sickle cell disease: a nationwide cohort study of Medicare and Medicaid beneficiaries.镰状细胞病的长期生存:医疗保险和医疗补助受益人的全国队列研究。
Blood Adv. 2023 Jul 11;7(13):3276-3283. doi: 10.1182/bloodadvances.2022009202.
9
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.
10
Blood diseases in Africa: Redressing unjust disparities is an urgent unmet need.非洲的血液疾病:纠正不公正的差距是一项迫切未得到满足的需求。
Am J Hematol. 2022 Dec;97(12):1505-1506. doi: 10.1002/ajh.26754. Epub 2022 Oct 27.