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遗传性眼病患者家庭对远程遗传学的接受程度。

Acceptability of Telegenetics for Families with Genetic Eye Diseases.

机构信息

Moorfields Eye Hospital NHS Foundation Trust, London EC1V 2PD, UK.

Institute of Ophthalmology, University College London, London EC1V 9EL, UK.

出版信息

Genes (Basel). 2021 Feb 15;12(2):276. doi: 10.3390/genes12020276.

Abstract

Healthcare providers around the world have implemented remote routine consultations to minimise disruption during the COVID-19 pandemic. Virtual clinics are particularly suitable for patients with genetic eye diseases as they rely on detailed histories with genetic counselling. During April-June 2019, the opinion of carers of children with inherited eye disorders attending the ocular genetics service at Moorfields Eye Hospital NHS Foundation Trust (MEH) were canvassed. Sixty-five percent of families ( = 35/54) preferred to have investigations carried out locally rather than travel to MEH, with 64% opting for a virtual consultation to interpret the results. The most popular mode of remote contact was via telephone (14/31), with video call being least preferred (8/31). Hence, 54 families who had received a telephone consultation mid-pandemic (November 2020-January 2021) were contacted to re-evaluate the acceptability of telegenetics using the Clinical Genetics Satisfaction Indicator and Telemedicine Satisfaction Questionnaire. Overall, 50 carers participated (response rate 93%); 58% of participants found teleconsultations acceptable and 54% agreed they increased their access to care, but 67.5% preferred to be seen in person. Patient satisfaction was high with 90% strongly agreeing/agreeing they shared and received all necessary information. Ocular genetics is well-suited for remote service delivery, ideally alternated with face-to-face consultations.

摘要

世界各地的医疗保健提供者已经实施了远程常规咨询,以尽量减少 COVID-19 大流行期间的干扰。虚拟诊所特别适合患有遗传性眼病的患者,因为它们依赖于详细的病史和遗传咨询。2019 年 4 月至 6 月,调查了在 Moorfields Eye Hospital NHS Foundation Trust(MEH)眼科遗传学服务就诊的遗传性眼部疾病儿童的照顾者的意见。54 个家庭中有 65%(=35/54)更喜欢在当地进行检查,而不是前往 MEH,其中 64%选择虚拟咨询来解释结果。最受欢迎的远程联系方式是电话(14/31),视频通话最不受欢迎(8/31)。因此,在大流行期间(2020 年 11 月至 2021 年 1 月)对 54 个接受过电话咨询的家庭进行了联系,以使用临床遗传学满意度指标和远程医疗满意度问卷重新评估远程遗传学的可接受性。总体而言,有 50 位照顾者(响应率 93%)参加了调查;58%的参与者认为远程咨询可以接受,54%的参与者同意远程咨询增加了他们获得护理的机会,但 67.5%的人更喜欢亲自就诊。患者满意度很高,90%的患者强烈同意/同意他们分享并收到了所有必要的信息。眼科遗传学非常适合远程服务交付,理想情况下与面对面咨询交替进行。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2045/7919280/9a97f8b87f71/genes-12-00276-g001.jpg

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