Public health science agenda for congenital heart defects: report from a Centers for Disease Control and Prevention experts meeting.
Public health science agenda for congenital heart defects: report from a Centers for Disease Control and Prevention experts meeting.
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DOI：
10.1161/jaha.113.000256
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发表时间：
2013-08-28
影响因子：
5.4
通讯作者：
Honein MA
中科院分区：
文献类型：
--
作者：
Oster ME;Riehle-Colarusso T;Simeone RM;Gurvitz M;Kaltman JR;McConnell M;Rosenthal GL;Honein MA
先天性心脏缺陷（CHDs）是最常见的出生缺陷类型，每年影响1%的新生儿。尽管生存率随着时间的推移而提高，但在了解冠心病对整个生命周期的公共卫生影响方面仍存在许多差距。认识到“缺乏关于所有年龄段先天性心脏病患者的严格流行病学和纵向数据”，美国国会通过2012年拨款法案向美国疾病控制和预防中心（CDC）提供资金，以调查在了解冠心病对公共卫生影响方面的差距。考虑到在有限的资源下有大量可能的主题需要解决，疾病预防控制中心邀请专家于2012年9月10日至11日举行会议，寻求个人对冠心病理解方面的主要差距的投入，并提出解决这些差距的公共卫生战略建议。50位专家出席了会议，他们代表了不同的专业和观点，包括医疗内容（CHDs）、方法（公共卫生战略）和个人经验。该小组包括来自不同学科的人员和利益相关者（内科医生、外科医生、流行病学家、公共卫生官员、倡导者和患者），广泛代表了公共卫生、专业和冠心病倡导组织（专家的完整名单包含在致谢部分）。会议开始前，与会者了解了背景信息，为会议奠定基础。参与者被要求参加由美国疾病控制与预防中心主办的两场现场网络研讨会中的一场，以概述先天性心脏缺陷的公共卫生框架。与会者还收到了涵盖公共卫生和先天性心脏缺陷等关键主题的文章，供他们在会议前自行审查。3-6最后，在会议开始时，就流行病学、保健服务、长期发病率/死亡率以及长期社会心理和神经发育结果这四个关键领域的知识现状作了背景介绍。对于会议的主要活动，受邀者参加了以其中一个关键领域为中心的四个焦点小组中的一个。每个小组负责3项任务：(1)确定冠心病公共卫生方面的主要差距，(2)集思广益解决这些差距的潜在战略，(3)根据其潜在影响和可行性，建议确定差距和战略的优先次序。每个小组的结果都有明显的重叠，由全体与会者讨论，以帮助指导建议的主要重点领域的总体清单。在对确定的32个差距进行了大规模的小组讨论后，确定了优先考虑的差距，没有特定的顺序，包括整个生命周期中冠心病的患病率，冠心病发展的危险因素，冠心病患者的长期结局，冠心病患者的卫生服务提供，以及公众对冠心病负担和影响的认识。如表1所述，我们已将优先考虑的差距及其配套战略综合到冠心病的公共卫生科学议程中。
Congenital heart defects (CHDs) are the most common type of birth defect, affecting 1% of births per year. 1 Although survival has been improving over time, there remain numerous gaps in the understanding of the public health impact of CHDs across the lifespan. Recognizing that there was “a lack of rigorous epidemiological and longitudinal data on individuals of all ages with congenital heart disease,” the US Congress provided funding through the Appropriations Act of 2012 to the US Centers for Disease Control and Prevention (CDC) to investigate the gaps in understanding of the public health impact of CHDs. 2 Given the broad array of possible topics to address with limited resources, the CDC invited experts to a meeting on September 10–11, 2012, to seek individual input on the major gaps in the understanding of CHDs and to suggest public health strategies to address those gaps.Fifty experts attended the meeting representing diverse specialties and perspectives including medical content (CHDs), methods (public health strategies), and personal experience. The group included persons and stakeholders from varied disciplines (physicians, surgeons, epidemiologists, public health officials, advocates, and patients) with a broad representation of public health, professional, and CHD advocacy organizations (the full list of experts is included in the Acknowledgments section). Prior to the meeting, participants received background information to lay the foundation for the meeting. Participants were asked to attend 1 of 2 live webinars hosted by the CDC to outline the public health framework for congenital heart defects. Participants also received articles covering key topics in public health and congenital heart defects for review on their own prior to the meeting. 3–6 Finally, at the initiation of the meeting, background presentations were delivered on the current state of knowledge for each of the 4 key areas: epidemiology, health services, long-term morbidity/mortality, and long-term psychosocial and neurodevelopmental outcomes. For the major activity of the conference, invitees participated in 1 of 4 focus groups centered on 1 of those key areas. Each group was charged with 3 tasks:(1) identifying the key gaps in public health for CHDs,(2) brainstorming potential strategies to address those gaps, and (3) suggesting a prioritization of the identified gaps and strategies based on their potential impact and feasibility. The results of each group, with notable overlaps, were discussed by the full panel of participants to help guide an overall list of suggested major focus areas. After a large group discussion of the 32 gaps identified, the gaps identified as prioritized, in no particular order, included prevalence of CHDs across the lifespan, risk factors for development of CHDs, long-term outcomes for persons with CHDs, health services delivery for persons with CHDs, and public awareness of the burden and impact of CHDs. As outlined in Table 1, we have synthesized the prioritized gaps and their accompanying strategies into a public health science agenda for CHDs.