评估安全网络系统中的癌症遗传服务:克服障碍,实现超越CHARM研究项目的持久影响。

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2023-06-01 DOI:10.1007/s12687-023-00647-x
Sonia Okuyama, Larissa L White, Katherine P Anderson, Elizabeth Medina, Sonia Deutsch, Chelese Ransom, Paige Jackson, Tia L Kauffman, Kathleen F Mittendorf, Michael C Leo, Joanna E Bulkley, Benjamin S Wilfond, Katrina Ab Goddard, Heather Spencer Feigelson
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引用次数: 0

摘要

服务不足的患者在接受癌症遗传服务方面面临巨大障碍。癌症健康评估惠及许多人(CHARM)研究评估了增加遗传癌症综合征(HCS)风险人群中获得基因检测的途径。在这里,我们报告了在低资源环境中成功实施的CHARM,以及在这种环境中继续进行遗传风险评估的可持续过程的发展。研究小组包括丹佛健康中心的主要临床人员和患者顾问,为研究方法和材料提供意见。通过反复和合作的利益相关者参与,团队确定了障碍并制定了解决方案,这些解决方案既可以促进参与CHARM,又可以在临床护理中实施和维持长期。以基础设施建设为重点,开发了教育模块,以提高转诊提供者的认识,并在电子病历中实施了识别和管理HCS患者的标准方法。364名DH患者成功完成了研究中的风险评估工具,我们观察到HCS遗传学转诊持续增加(干预后从2017年的179例增加到2021年的427例)。在资源匮乏的安全网卫生系统中实施CHARM研究,在获得癌症遗传风险评估和服务方面取得了可持续的改善,即使在研究结束后,这种改善仍在继续。试验注册编号NCT03426878。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project.

Underserved patients face substantial barriers to receiving cancer genetic services. The Cancer Health Assessments Reaching Many (CHARM) study evaluated ways to increase access to genetic testing for individuals in underserved populations at risk for hereditary cancer syndromes (HCS). Here, we report the successful implementation of CHARM in a low-resource environment and the development of sustainable processes to continue genetic risk assessment in this setting. The research team involved key clinical personnel and patient advisors at Denver Health to provide input on study methods and materials. Through iterative and collaborative stakeholder engagement, the team identified barriers and developed solutions that would both facilitate participation in CHARM and be feasible to implement and sustain long term in clinical care. With a focus on infrastructure building, educational modules were developed to increase awareness among referring providers, and standard methods of identifying and managing HCS patients were implemented in the electronic medical record. Three hundred sixty-four DH patients successfully completed the risk assessment tool within the study, and we observed a sustained increase in referrals to genetics for HCS (from 179 in 2017 to 427 in 2021 post-intervention). Implementation of the CHARM study at a low-resourced safety net health system resulted in sustainable improvements in access to cancer genetic risk assessment and services that continue even after the study ended.Trial registration NCT03426878.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
期刊最新文献
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