TY - JOUR AU - Gupta, Aarushi AU - Cafazzo, Joseph A AU - IJzerman, Maarten J AU - Swart, Joost F AU - Vastert, Sebastiaan AU - Wulffraat, Nico M AU - Benseler, Susanne AU - Marshall, Deborah AU - Yeung, Rae AU - Twilt, Marinka PY - 2021 DA - 201/12/24 TI -儿科基因组健康素养干预:范围审查JO - J医学互联网Res SP - e26684 VL - 23is - 12kw -儿科KW -患者教育KW -遗传学KW -基因组学KW - mHealth KW -数字健康KW -互联网KW -遗传知识KW -基因组健康素养KW -儿童KW -青少年AB -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。纳入标准包括:研究包括遗传、基因组或遗传和基因组信息的组合; 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. SN - 1438-8871 UR - //www.mybigtv.com/2021/12/e26684 UR - https://doi.org/10.2196/26684 UR - http://www.ncbi.nlm.nih.gov/pubmed/34951592 DO - 10.2196/26684 ID - info:doi/10.2196/26684 ER -