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采用远程遗传学与面对面和电话预约进行癌症遗传咨询比较:一项部分随机患者偏好的初步研究结果。

Comparing cancer genetic counselling using telegenetics with in-person and telephone appointments: Results of a partially randomised patient-preference pilot study.

机构信息

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

Department of Clinical Genetics, Royal North Shore Hospital, St Leonards, NSW, Australia.

出版信息

J Telemed Telecare. 2024 Jul;30(6):949-960. doi: 10.1177/1357633X221112556. Epub 2022 Jul 14.

Abstract

INTRODUCTION

Direct-to-patient telegenetics, which uses video conferencing to connect health professionals directly to patients' devices, has been widely adopted during the pandemic. However, limited evidence currently supports its use in cancer genetic counselling.

METHODS

Before the pandemic, we conducted a two-arm partially randomised patient-preference pilot trial to evaluate direct-to-patient telegenetics for patients and genetic counsellors. Patients were randomised to a standard care (telephone/in-person) or direct-to-patient telegenetics appointment. Patients completed questionnaires before, during and after appointments measuring: psychological distress, perceived genetic counsellor empathy, telegenetics satisfaction and technical challenges. Genetic counsellor-reported outcomes -measured using purpose-designed questionnaires- included telegenetics satisfaction, therapeutic alliance and time for assessment. Open-ended patient and genetic counsellor questionnaire responses were synthesised using content analysis.

RESULTS

Fifty-six patients and seven genetic counsellors participated. Thirteen patients switched appointment type. No significant differences in distress (  =  0.84) were identified between direct-to-patient telegenetics and standard care. Perceived genetic counsellor empathy was high for all appointment types. There was no evidence of differences in reported maximum empathy scores between direct-to-patient telegenetics and standard care [telephone (  =  0.57); in-person (  =  0.44)]. Patients reported high direct-to-patient telegenetics satisfaction despite technical challenges in most appointments (65%). Genetic counsellors were satisfied with direct-to-patient telegenetics and perceived high therapeutic alliance irrespective of appointment type. No significant differences in genetic counsellor time were identified between direct-to-patient telegenetics and standard care [telephone ( > 0.90); in-person (  =  0.35)].

DISCUSSION

Our results suggest that direct-to-patient telegenetics is a satisfactory service delivery model that does not appear to compromise patient-genetic counsellor relationships or increase patient distress. These findings support direct-to-patient telegenetics use in cancer genetic counselling, although larger trials are needed.

摘要

简介

直接面向患者的远程遗传学使用视频会议将医疗专业人员直接连接到患者的设备上,在大流行期间已被广泛采用。然而,目前支持其在癌症遗传咨询中使用的证据有限。

方法

在大流行之前,我们进行了一项两臂部分随机患者偏好试点试验,以评估直接面向患者的远程遗传学在患者和遗传咨询师中的应用。患者被随机分配到标准护理(电话/面对面)或直接面向患者的远程遗传学预约。患者在预约前后完成了衡量心理困扰、感知遗传咨询师同理心、远程遗传学满意度和技术挑战的问卷。遗传咨询师报告的结果 - 使用专门设计的问卷衡量 - 包括远程遗传学满意度、治疗联盟和评估时间。患者和遗传咨询师的开放式问卷回答使用内容分析进行综合。

结果

共有 56 名患者和 7 名遗传咨询师参与。13 名患者改变了预约类型。直接面向患者的远程遗传学与标准护理之间在困扰方面没有显著差异(  =  0.84)。所有预约类型的感知遗传咨询师同理心都很高。直接面向患者的远程遗传学和标准护理之间报告的最大同理心评分没有差异[电话(  =  0.57);面对面(  =  0.44)]。尽管大多数预约都存在技术挑战,但患者仍报告对直接面向患者的远程遗传学非常满意(65%)。遗传咨询师对直接面向患者的远程遗传学感到满意,无论预约类型如何,他们都认为治疗联盟很高。直接面向患者的远程遗传学和标准护理之间遗传咨询师的时间没有显著差异[电话( > 0.90);面对面(  =  0.35)]。

讨论

我们的结果表明,直接面向患者的远程遗传学是一种令人满意的服务交付模式,似乎不会损害医患关系或增加患者的困扰。这些发现支持在癌症遗传咨询中使用直接面向患者的远程遗传学,尽管需要更大的试验。

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