Bartolucci Pablo
Hôpital Henri Mondor AP-HP. UPEC, Créteil, France.
Hematology Am Soc Hematol Educ Program. 2024 Dec 6;2024(1):618-622. doi: 10.1182/hematology.2024000586.
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.
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。