遗传性心脏病服务的发展:现状与未来展望。

IF 6.7 2区 医学 Q1 Medicine
Thomas Alway, Rachel Bastiaenen, Antonis Pantazis, Leema Robert, Rhoda Akilapa, John Whitaker, Stephen P Page, Gerald Carr-White
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引用次数: 0

摘要

背景:过去二十年来,遗传性心脏病(ICC)中心不断涌现,其目的是通过早期诊断、基因检测、风险评估和专科治疗,改善患者及其家庭的预后:使用 PubMed (https://pubmed.ncbi.nlm.nih.gov/) 进行了文献检索。对英国国家医疗服务系统(NHS England)、英国国家医疗服务系统改进(NHS Improvement)和 PHG 基金会委托进行的 ICC 服务回顾进行了评估:ICC 患者管理需要多学科方法。ICC 服务主要集中在三级医疗中心。尽管有所扩大,但提供的医疗服务仍不足以满足日益增长的需求。获得服务的途径不一致,部分原因是地域差异和缺乏标准化路径:最佳的 ICC 护理模式仍未确定,尽管人们对 "中心辐射 "网络的兴趣日益浓厚,该网络可帮助二级和三级服务的整合以及护理的遣返:基因主流化是基因组医学服务联盟的优先事项。在 COVID-19 大流行期间,远程医疗和虚拟诊所的好处得到了验证。其他提高资源利用效率的创新措施,如临床科学家领导的诊所和护士领导的诊所,也显示出了良好的前景:国家医疗服务系统 ICC 服务规范计划更新,鉴于自上次审查以来的十年间 ICC 格局的快速演变,这次更新似乎恰逢其时。这有可能满足包括国家审计、标准化路径和 ICC 网络在内的各种需求,以改善管理和护理公平性。将专科服务的委托权下放给综合护理系统也为加强地区指导提供了机会。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The development of inherited cardiac conditions services: current position and future perspectives.

Background: Over the last two decades, inherited cardiac conditions (ICC) centres have emerged with the aim of improving outcomes for patients and their families, through early diagnosis, genetic testing, risk assessment and specialist treatment.

Sources of data: A literature search was performed using PubMed (https://pubmed.ncbi.nlm.nih.gov/). Commissioned ICC service reviews from NHS England, NHS Improvement and PHG Foundation were evaluated.

Areas of agreement: ICC patient management requires a multi-disciplinary approach. ICC services are predominantly based within tertiary centres. Despite expansion, provision of care remains inadequate to meet rising demands. Access to services is inconsistent, partly due to geographic variation and lack of standardized pathways.

Areas of controversy: The optimal ICC care model remains undecided, although there is growing interest in 'hub-and-spoke' networks, which could aid secondary and tertiary service integration and repatriation of care.

Growing points: Genetic mainstreaming is a priority for the Genomic Medicine Service Alliance. The benefits of telehealth and virtual clinics have been validated by their use during the COVID-19 pandemic. Other innovations to improve resource efficiency, such as clinical scientist-led and nurse-led clinics, show promise.

Areas timely for developing research: An update for the NHS ICC service specifications is planned that appears well timed given the rapid evolution of the ICC landscape in the decade since last review. This has the potential to address needs including national audit, standardized pathways and ICC networks to improve governance and equity of care. Delegation of commissioning for specialist services to integrated care systems may also provide opportunity for increased regional direction.

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来源期刊
British medical bulletin
British medical bulletin 医学-医学:内科
CiteScore
13.10
自引率
1.50%
发文量
24
审稿时长
>12 weeks
期刊介绍: British Medical Bulletin is a multidisciplinary publication, which comprises high quality reviews aimed at generalist physicians, junior doctors, and medical students in both developed and developing countries. Its key aims are to provide interpretations of growing points in medicine by trusted experts in the field, and to assist practitioners in incorporating not just evidence but new conceptual ways of thinking into their practice.
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