“It’s hard to wait”: Provider perspectives on current genomic care in safety-net NICUs

IF 6.6 1区 医学 Q1 GENETICS & HEREDITY
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引用次数: 0

Abstract

Purpose

Critically ill infants from marginalized populations disproportionately receive care in neonatal intensive care units (NICUs) that lack access to state-of-the-art genomic care, leading to inequitable outcomes. We sought provider perspectives to inform our implementation study (VIGOR) providing rapid genomic sequencing within these settings.

Methods

We conducted semistructured focus groups with neonatal and genetics providers at 6 NICUs at safety-net hospitals, informed by the Promoting Action on Research Implementation in Health Services framework, which incorporates evidence, context, and facilitation domains. We iteratively developed codes and themes until thematic saturation was reached.

Results

Regarding evidence, providers felt that genetic testing benefits infants and families. Regarding context, the major barriers identified to genomic care were genetic testing cost, lack of genetics expertise for disclosure and follow-up, and navigating the complexity of selecting and ordering genetic tests. Providers had negative feelings about the current status quo and inequity in genomic care across NICUs. Regarding facilitation, providers felt that a virtual support model such as VIGOR would address major barriers and foster family-centered care and collaboration.

Conclusion

NICU providers at safety-net hospitals believe that access to state-of-the-art genomic care is critical for optimizing infant outcomes; yet, substantial barriers exist that the VIGOR study may address.

"难以等待":提供者对安全网新生儿重症监护室当前基因组护理的看法》(Provider Perspectives on Current Genomic Care in Safety-Net NICUs)。
目的:来自边缘化人群的重症婴儿在新生儿重症监护病房(NICU)接受治疗的比例过高,而这些病房缺乏最先进的基因组治疗,导致治疗结果不公平。我们寻求医疗服务提供者的观点,为我们在这些环境中提供快速基因组测序的实施研究(VIGOR)提供参考:我们与五家安全网医院新生儿重症监护室的新生儿和遗传学服务提供者进行了半结构化焦点小组讨论,讨论参考了 "促进医疗服务研究实施行动 "框架,该框架包含证据、背景和促进领域。我们反复编写代码和主题,直至达到主题饱和:在证据方面,医疗服务提供者认为基因检测对婴儿和家庭有益。在背景方面,基因组护理的主要障碍是基因检测费用、缺乏遗传学专业知识以进行信息披露和后续跟踪,以及如何应对选择和订购基因检测的复杂性。医疗服务提供者对新生儿重症监护室基因组护理的现状和不公平现象持负面看法。在促进方面,医疗服务提供者认为,VIGOR 等虚拟支持模式将解决主要障碍,并促进以家庭为中心的护理和合作:结论:安全网医院的新生儿重症监护室医疗人员认为,获得最先进的基因组护理对优化婴儿预后至关重要,但仍存在大量障碍,VIGOR 研究可能会解决这些问题。
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来源期刊
Genetics in Medicine
Genetics in Medicine 医学-遗传学
CiteScore
15.20
自引率
6.80%
发文量
857
审稿时长
1.3 weeks
期刊介绍: Genetics in Medicine (GIM) is the official journal of the American College of Medical Genetics and Genomics. The journal''s mission is to enhance the knowledge, understanding, and practice of medical genetics and genomics through publications in clinical and laboratory genetics and genomics, including ethical, legal, and social issues as well as public health. GIM encourages research that combats racism, includes diverse populations and is written by authors from diverse and underrepresented backgrounds.
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