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遗传与姑息治疗健康专业人员对将遗传学纳入姑息治疗的看法的调查。

A survey of genetic and palliative care health professionals' views of integrating genetics into palliative care.

机构信息

Graduate School of Health, University of Technology Sydney, Ultimo, NSW, Australia.

Hereditary Cancer Centre, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Randwick, NSW, Australia.

出版信息

Eur J Hum Genet. 2024 Jan;32(1):109-116. doi: 10.1038/s41431-023-01409-6. Epub 2023 Jun 21.

Abstract

Genetic counselling and testing have utility for people with palliative care needs and their families. However, genetic and palliative care health professionals have described difficulties initiating palliative-genetic discussions. Between March and July 2022, we received n = 73 surveys (6% response rate) from genetic and palliative care health professionals in Australia and New Zealand that assessed and compared barriers and facilitators. The main perceived barrier to both groups was palliative care health professionals' lack of genetic knowledge (44%). Most palliative care health professionals were 'not at all confident' performing several activities, including discussing DNA banking (52%) and knowing their legal responsibilities when sharing genetic information (58%). The most frequently selected facilitator for genetic health professionals was fostering close relationships with palliative care health professionals (52%), while palliative care health professionals indicated a genetic referral template (51%) would be of assistance. Almost all participants agreed genetic discussions do not undermine the central ethos of palliative care (87%). Fewer palliative care health professionals considered themselves well situated to have genetic discussions with a palliative patient's family compared to genetic health professionals (p = 0.014). Our results suggest that genetic and palliative care health professionals support integrating genetics into palliative care, although refinement of the palliative care health professionals' role in this process is required. We have identified intervention targets to overcome barriers related to knowledge and confidence, which ought to be integrated into future interventions designed to support health professionals deliver the benefits of genetic information to people with palliative care needs and their families.

摘要

遗传咨询和检测对有姑息治疗需求的患者及其家属具有一定的作用。然而,遗传和姑息治疗健康专业人员曾描述过在开展姑息-遗传讨论方面存在困难。在 2022 年 3 月至 7 月期间,我们收到了来自澳大利亚和新西兰的遗传和姑息治疗健康专业人员的 n = 73 份调查(6%的回复率),这些调查评估和比较了障碍和促进因素。两个专业群体都认为主要障碍是姑息治疗健康专业人员缺乏遗传知识(44%)。大多数姑息治疗健康专业人员在执行若干活动时“一点也不自信”,这些活动包括讨论 DNA 银行(52%)以及在分享遗传信息时了解其法律责任(58%)。遗传健康专业人员最常选择的促进因素是与姑息治疗健康专业人员建立密切关系(52%),而姑息治疗健康专业人员则表示遗传转介模板(51%)会有所帮助。几乎所有参与者都同意遗传讨论不会破坏姑息治疗的核心精神(87%)。与遗传健康专业人员相比,较少的姑息治疗健康专业人员认为自己有能力与姑息治疗患者的家属进行遗传讨论(p = 0.014)。我们的研究结果表明,遗传和姑息治疗健康专业人员支持将遗传学纳入姑息治疗,尽管需要进一步明确姑息治疗健康专业人员在这一过程中的角色。我们已经确定了干预目标,以克服与知识和信心相关的障碍,这些目标应该纳入旨在支持健康专业人员为有姑息治疗需求的患者及其家属提供遗传信息益处的未来干预措施中。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ddb2/10772073/9df81b374e6b/41431_2023_1409_Fig1_HTML.jpg

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