Katapodi Maria C, Pedrazzani Carla, Barnoy Sivia, Dagan Efrat, Fluri Muriel, Jones Tarsha, Kim Sue, Underhill-Blazey Meghan L, Uveges Melissa K, Dwyer Andrew A
International Nursing CASCADE Consortium, Basel, Switzerland.
Department of Clinical Research, University of Basel, Basel, Switzerland.
Front Genet. 2024 Jan 8;14:1337366. doi: 10.3389/fgene.2023.1337366. eCollection 2023.
Efforts are needed across disciplines to close disparities in genomic healthcare. Nurses are the most numerous trained healthcare professionals worldwide and can play a key role in addressing disparities across the continuum of care. ACCESS is an empirically-based theoretical framework to guide clinical practice in order to ameliorate genomic disparities. The framework was developed by the International Nursing CASCADE Consortium based on evidence collected between 2005 and 2023 from individuals and families of various ethnic backgrounds, with diverse hereditary conditions, and in different healthcare systems, i.e., Israel, Korea, Switzerland, and several U.S. States. The components of the framework were validated against published scientific literature. ACCESS stands for Advocating, Coping, Communication, cascadE Screening, and Surveillance. Each component is demonstrated in concrete examples of clinical practice within the scope of the nursing profession related to genomic healthcare. Key outcomes include advocacy, active coping, intrafamilial communication, cascade screening, and lifelong surveillance. Advocacy entails timely identification of at-risk individuals, facilitating referrals to specialized services, and informed decision-making for testing. Active coping enhances lifelong adaptation and management of disease risk. Effective intrafamilial communication of predisposition to hereditary disease supports cascade testing of unaffected at-risk relatives. Lifelong surveillance is essential for identifying recurrence, changes in health status, and disease trajectory for life-threatening and for life-altering conditions. ACCESS provides a standardized, systematic, situational, and unifying guide to practice and is applicable for nursing and for other healthcare professions. When appropriately enacted it will contribute towards equitable access to genomic resources and services.
需要跨学科努力来消除基因组医疗保健方面的差距。护士是全球数量最多的受过专业训练的医疗保健专业人员,在解决整个护理过程中的差距方面可以发挥关键作用。ACCESS是一个基于实证的理论框架,用于指导临床实践,以改善基因组差距。该框架由国际护理级联联盟(International Nursing CASCADE Consortium)根据2005年至2023年期间从不同种族背景、患有不同遗传疾病以及处于不同医疗保健系统(即以色列、韩国、瑞士和美国的几个州)的个人和家庭收集的证据而制定。该框架的组成部分已根据已发表的科学文献进行了验证。ACCESS代表倡导、应对、沟通、级联筛查和监测。每个组成部分都在与基因组医疗保健相关的护理专业范围内的临床实践具体示例中得到了体现。关键成果包括倡导、积极应对、家庭内部沟通、级联筛查和终身监测。倡导包括及时识别高危个体、促进转介到专科服务以及进行知情的检测决策。积极应对可增强终身适应和疾病风险管理能力。对遗传性疾病易感性进行有效的家庭内部沟通有助于对未受影响的高危亲属进行级联检测。终身监测对于识别复发、健康状况变化以及危及生命和改变生活状况的疾病轨迹至关重要。ACCESS为实践提供了标准化、系统化、情境化和统一的指南,适用于护理和其他医疗保健专业。如果适当实施,它将有助于公平获取基因组资源和服务。
Early Hum Dev. 2020-11
JBI Database System Rev Implement Rep. 2015-1
JBI Database System Rev Implement Rep. 2015-1
JBI Evid Synth. 2024-11-1
Genes (Basel). 2025-5-22
Nurs Clin North Am. 2025-6
JBI Evid Synth. 2024-11-1
Cancers (Basel). 2024-5-2
Health Aff Sch. 2023-6-20
Clin Ther. 2023-8
Am Soc Clin Oncol Educ Book. 2023-5
Can J Nurs Res. 2023-12