在TeleKidSeq试点研究中,调查通过远程医疗在不同家庭中披露基因组结果时屏幕共享视觉辅助工具的影响。

IF 1.3 4区 医学 Q4 GENETICS & HEREDITY Public Health Genomics Pub Date : 2025-01-17 DOI:10.1159/000542444
Jacqueline A Odgis, Nicole R Kelly, Monisha Sebastin, Laura Scarimbolo, Beverly J Insel, Sabrina A Suckiel, Katherine E Bonini, Priya N Marathe, Miranda Di Biase, Kaitlyn Brown, Katie M Gallagher, Michelle A Ramos, Jessica E Rodriguez, Nicole Yelton, Karla López Aguiñiga, Michelle A Rodriguez, Estefany María, Jessenia Lopez, Randi E Zinberg, George A Diaz, John M Greally, Noura S Abul-Husn, Laurie J Bauman, Bruce D Gelb, Carol R Horowitz, Eimear E Kenny, Melissa P Wasserstein
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引用次数: 0

摘要

目的:远程医疗遗传咨询在满意度、知识和心理结果方面与面对面就诊相当,但在远程医疗平台上使用视觉辅助可能具有挑战性。这项试点研究评估了在结果披露环节通过Zoom显示视觉辅助的“屏幕共享”功能是否对父母的体验和对孩子基因组结果的理解产生积极影响,特别是在代表性不足的群体和英语水平有限的群体中。方法:在TeleKidSeq试点研究中,409名疑似遗传疾病的儿童进行了基因组测序。家庭通过电视随机接收基因组结果,有(ScrS)或没有(NScrS)共享视觉辅助工具。西班牙语或说英语的父母/法定监护人在三个时间点完成调查,以评估感知到的和客观的理解、感知到的信心和远程保健经验。随着时间的推移,回归模型评估了屏幕共享的影响。结果:总体而言,理解和远程医疗体验评分较高,ScrS (N = 192)和NScrS (N = 200)组在感知(p = 0.32)或客观(0.94)理解、信心(p = 0.14)随时间变化或远程医疗体验(p = 0.10)方面无显著差异。当根据社会人口学特征和结果披露期间使用的设备类型进行分层时,我们观察到在一些亚组中屏幕共享的效果存在细微差异。结论:虽然屏幕共享对总体结果没有显著影响,但我们确定了在人群中屏幕共享的适度影响,这突出了定制沟通策略的必要性,以确保多样化的多语言社区从基于远程医疗的基因组结果披露中获得公平的利益。未来的研究需要确定某些类型的视觉辅助是否能在更大、更可靠的研究中最好地提高基因组结果的披露,这些研究旨在检测较小的影响和亚组差异。
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Investigating the impact of screen-sharing visual aids during genomic results disclosure via telehealth in diverse families in the TeleKidSeq pilot study.

Purpose: Telehealth genetic counseling is comparable to in-person visits in terms of satisfaction, knowledge, and psychological outcomes, but using visual aids can be challenging on telehealth platforms. This pilot study assessed if the "screen-sharing" feature via Zoom to display visual aids during results disclosure session positively impacted parental experience and comprehension of their child's genomic results especially in underrepresented groups and those with limited English proficiency.

Methods: In the TeleKidSeq pilot study, 409 children with suspected genetic conditions underwent genome sequencing. Families were randomized to receive genomic results via televisits with (ScrS) or without (NScrS) screen-sharing of visual aids. Spanish- or English-speaking parents/legal guardians completed surveys at three timepoints to assess perceived and objective understanding, perceived confidence, and telehealth experience. Regression models evaluated the effect of screen-sharing over time.

Results: Overall, understanding and telehealth experience ratings were high, with no significant differences between the ScrS (N = 192) and NScrS (N = 200) arms with regard to perceived (p = 0.32) or objective (0.94) understanding, confidence (p = 0.14) over time, or telehealth experience (p = 0.10). When stratifying by sociodemographic characteristics and type of device used during results disclosure, we observed subtle differences in the effect of screen-sharing within some sub-groups.

Conclusion: While screen-sharing had no significant impact on overall outcomes, we identified modest effects of screen-sharing within population groups that highlight the need for tailored communication strategies to ensure diverse, multilingual communities derive equitable benefit from telehealth-based genomic results disclosure. Future research is needed to determine whether certain types of visual aids best enhance genomic results disclosure in larger, more robust studies designed to detect smaller effects and subgroup differences.

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来源期刊
Public Health Genomics
Public Health Genomics 医学-公共卫生、环境卫生与职业卫生
CiteScore
2.90
自引率
0.00%
发文量
14
审稿时长
>12 weeks
期刊介绍: ''Public Health Genomics'' is the leading international journal focusing on the timely translation of genome-based knowledge and technologies into public health, health policies, and healthcare as a whole. This peer-reviewed journal is a bimonthly forum featuring original papers, reviews, short communications, and policy statements. It is supplemented by topic-specific issues providing a comprehensive, holistic and ''all-inclusive'' picture of the chosen subject. Multidisciplinary in scope, it combines theoretical and empirical work from a range of disciplines, notably public health, molecular and medical sciences, the humanities and social sciences. In so doing, it also takes into account rapid scientific advances from fields such as systems biology, microbiomics, epigenomics or information and communication technologies as well as the hight potential of ''big data'' for public health.
期刊最新文献
Investigating the impact of screen-sharing visual aids during genomic results disclosure via telehealth in diverse families in the TeleKidSeq pilot study. Adopting public health genomics when the house is on fire: How will we navigate to 2030? Modern Family: An Ethical Justification for System-Led Contact of Relatives Eligible for Cascade Screening in the United States. Variation Exists in Service Delivery: Similarities and Differences in the Provision of a Whole Genome Sequencing Service for Paediatric Rare Disease Patients in the National Health Service in England. Evaluating the Implementation of the Rapid Prenatal Exome Sequencing Service in England.
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