Division for Adult Congenital Heart Disease, Department of Cardiovascular Medicine, University Hospital Centre Zagreb, Zagreb, Croatia.
Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton Hospital, London, UK.
Eur J Heart Fail. 2021 Mar;23(3):445-453. doi: 10.1002/ejhf.2040. Epub 2020 Nov 19.
AIMS: To examine the current status of care and needs of adult congenital heart disease (ACHD) services in the Central and South Eastern European (CESEE) region. METHODS AND RESULTS: We obtained data regarding the national ACHD status for 19 CESEE countries from their ACHD representative based on an extensive survey for 2017 and/or 2018. Thirteen countries reported at least one tertiary ACHD centre with a median year of centre establishment in 2007 (interquartile range 2002-2013). ACHD centres reported a median of 2114 patients under active follow-up with an annual cardiac catheter and surgical intervention volume of 49 and 40, respectively. The majority (90%) of catheter or surgical interventions were funded by government reimbursement schemes. However, all 19 countries had financial caps on a hospital level, leading to patient waiting lists and restrictions in the number of procedures that can be performed. The median number of ACHD specialists per country was 3. The majority of centres (75%) did not have ACHD specialist nurses. The six countries with no dedicated ACHD centres had lower Gross Domestic Product per capita compared to the remainder (P = 0.005). CONCLUSION: The majority of countries in CESEE now have established ACHD services with adequate infrastructure and a patient workload comparable to the rest of Europe, but important gaps still exist. ACHD care is challenged or compromised by limited financial resources, insufficient staffing levels, and reimbursement caps on essential procedures compared to Western Europe. Active advocacy and increased resources are required to address the inequalities of care across the continent.
目的:调查中东欧和东南欧(CESEE)地区成人先天性心脏病(ACHD)服务的现状和需求。
方法和结果:我们根据对 2017 年和/或 2018 年的广泛调查,从该地区的 ACHD 代表处获得了 19 个 CESEE 国家的国家 ACHD 现状数据。13 个国家报告至少有一个三级 ACHD 中心,中心成立的中位数年份为 2007 年(四分位间距为 2002-2013 年)。ACHD 中心报告的中位数为 2114 例正在接受积极随访的患者,每年的心脏导管和手术干预量分别为 49 例和 40 例。大多数(90%)的导管或手术干预由政府报销计划资助。然而,所有 19 个国家在医院层面都有财务上限,导致患者等待名单和可进行的手术数量受限。每个国家的 ACHD 专家中位数为 3 人。大多数中心(75%)没有 ACHD 专科护士。没有专门 ACHD 中心的六个国家的人均国内生产总值(GDP)低于其余国家(P=0.005)。
结论:CESEE 地区的大多数国家现在都建立了具有足够基础设施和与欧洲其他地区相当的患者工作量的 ACHD 服务,但仍存在重要差距。与西欧相比,ACHD 护理受到有限的财务资源、人员配备水平不足以及对基本程序的报销上限的挑战或影响。需要积极倡导和增加资源,以解决整个大陆的护理不平等问题。