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Paediatric to adult transition care for patients with sickle cell disease: a global perspective
The Lancet Haematology ( IF 24.7 ) Pub Date : 2020-03-24 , DOI: 10.1016/s2352-3026(20)30036-3
Baba Psalm Duniya Inusa , Claire Elizabeth Stewart , Shamarah Mathurin-Charles , Jerlym Porter , Lewis Li-yen Hsu , Wale Atoyebi , Mariane De Montalembert , Ijeoma Diaku-Akinwumi , Norah O Akinola , Biree Andemariam , Miguel Raul Abboud , Marsha Treadwell

Sickle cell disease is a life-threatening inherited condition designated as a public health priority by WHO. Increased longevity of patients with sickle cell disease in high-income, middle-income, and low-income countries present unprecedented challenges for all settings; however, a globally standardised solution for patient transition from paediatric to adult sickle cell disease health care is unlikely to address the challenges. We established a task force of experts from a multicountry (the USA, Europe, Middle East, and Africa) consortium. We combined themes from the literature with viewpoints from members of the task force and invited experts to provide a global overview of transition care practice, highlighting barriers to effective transition care and provide baseline recommendations that can be adapted to local needs. We highlighted priorities to consider for any young person with sickle cell disease transitioning from paediatric to adult health care: skills transfer, increasing self-efficacy, coordination, knowledge transfer, linking to adult services, and evaluating readiness (the SICKLE recommendations). These recommendations aim to ensure appropriate benchmarking of transition programming, but multisite prospective studies are needed to address this growing public health need.



中文翻译:

镰状细胞病患者的儿科到成人过渡护理:全球视角

镰状细胞病是威胁生命的遗传病,被世界卫生组织指定为公共卫生重点。在高收入,中等收入和低收入国家中,镰状细胞病患者的寿命延长,对所有环境都提出了前所未有的挑战;然而,用于患者从儿科到成人镰状细胞疾病医疗保健过渡的全球标准化解决方案不太可能解决挑战。我们建立了一个由多国(美国,欧洲,中东和非洲)财团的专家组成的工作组。我们将文献中的主题与工作队成员的观点相结合,并邀请专家对过渡护理实践进行全球概述,突出说明有效过渡护理的障碍,并提供适合当地需求的基线建议。我们着重指出了镰刀状细胞疾病从儿科向成人保健过渡的所有年轻人要考虑的优先事项:技能转移,提高自我效能,协调,知识转移,与成人服务联系以及评估准备情况(SICKLE建议)。这些建议旨在确保对过渡计划进行适当的基准测试,但是需要多站点前瞻性研究来解决这种日益增长的公共卫生需求。

更新日期:2020-03-26
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