%0期刊文章%@ 1438- 8871% I JMIR出版物%V 23卡塔尔世界杯8强波胆分析% N 12% P e26684% T基因组健康素养干预儿科:A Gupta,Aarushi %A Cafazzo,Joseph A %A IJzerman,Maarten J %A Swart,Joost F %A Vastert,Sebastiaan %A Wulffraat,Nico M %A Benseler,Susanne %A Marshall,Deborah %A Yeung,Rae %A Twilt,Marinka +风湿病科，儿科，阿尔伯塔儿童医院，28 Oki Drive NW，卡尔加里，AB, T3B 6A8，加拿大，1 403 955 7771，marinka.twilt@ahs.ca %K儿科%K患者教育%K遗传学%K基因组学%K mHealth %K数字健康%K互联网%K遗传知识%K基因组健康素养%K儿童%K青少年%D 2021 %7 24.12.2021 %9回顾%J J医学互联网Res %G英语%X背景:针对儿科患者的遗传和基因组测序方法的出现提出了关于基因组健康素养水平、接受基因组信息的态度以及使用这些信息来告知儿科患者及其父母的治疗决定的问题。然而，通过数字健康干预对儿科患者及其父母进行基因组概念教育的方法尚未得到完善。目的:本范围综述的主要目的是调查目前儿科患者及其父母的基因组健康素养水平和接受基因组信息的态度。第二个目标是调查患者教育干预措施，旨在测量和提高儿科患者及其父母的基因组健康素养。这项综述的结果将用于为未来的患者教育提供数字健康干预措施。方法:使用以下数据库:MEDLINE、Embase、CINAHL和Scopus，使用PRISMA-ScR(系统评价首选报告项目和范围评价元分析扩展)指南和协议完成范围评价。我们的搜索策略包括基因组信息，包括所有遗传和基因组术语、儿科和患者教育。 Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents <18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. Results: Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes toward receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge. Conclusions: This review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision-making related to genomic information. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts. %M 34951592 %R 10.2196/26684 %U //www.mybigtv.com/2021/12/e26684 %U https://doi.org/10.2196/26684 %U http://www.ncbi.nlm.nih.gov/pubmed/34951592