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镰状细胞病患者从儿科到成人的过渡护理:全球视角

Paediatric to adult transition care for patients with sickle cell disease: a global perspective.

作者信息

Inusa Baba Psalm Duniya, Stewart Claire Elizabeth, Mathurin-Charles Shamarah, Porter Jerlym, Hsu Lewis Li-Yen, Atoyebi Wale, De Montalembert Mariane, Diaku-Akinwumi Ijeoma, Akinola Norah O, Andemariam Biree, Abboud Miguel Raul, Treadwell Marsha

机构信息

Department of Paediatric Haematology, Evelina London Children's Hospital, Guy's and St Thomas NHS Foundation Trust, London, UK.

Department of Paediatrics, Imperial College Healthcare NHS Trust, London, UK.

出版信息

Lancet Haematol. 2020 Apr;7(4):e329-e341. doi: 10.1016/S2352-3026(20)30036-3.

Abstract

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.

摘要

镰状细胞病是一种危及生命的遗传性疾病,被世界卫生组织指定为公共卫生重点。高收入、中等收入和低收入国家中镰状细胞病患者寿命的延长给所有医疗环境带来了前所未有的挑战;然而,全球标准化的从儿科到成人镰状细胞病医疗保健的患者过渡解决方案不太可能应对这些挑战。我们成立了一个由多国(美国、欧洲、中东和非洲)联盟的专家组成的特别工作组。我们将文献中的主题与特别工作组成员的观点相结合,并邀请专家对过渡护理实践进行全球概述,突出有效过渡护理的障碍,并提供可根据当地需求调整的基线建议。我们强调了任何患有镰状细胞病的年轻人从儿科过渡到成人医疗保健时需要考虑的优先事项:技能转移、增强自我效能感、协调、知识转移、与成人服务机构建立联系以及评估准备情况(镰状细胞病建议)。这些建议旨在确保过渡计划有适当的基准,但需要开展多中心前瞻性研究来满足这一日益增长的公共卫生需求。

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