儿科癌症护理中的基因组测序研究：青少年及其父母的决策、态度和感知效用

IF 6.6 1区医学 Q1 GENETICS & HEREDITY

Genetics in Medicine Pub Date : 2024-08-01 DOI:10.1016/j.gim.2024.101168

{"title":"儿科癌症护理中的基因组测序研究：青少年及其父母的决策、态度和感知效用","authors":"","doi":"10.1016/j.gim.2024.101168","DOIUrl":null,"url":null,"abstract":"<div><h3>Purpose</h3><p>Professional guidelines recommend engaging adolescents and young adults (AYAs) in medical decision making<span><span> (DM), including whether to undergo genomic sequencing (GS). We explored </span>DM around GS and attitudes after return of GS results among a diverse group of AYAs with cancer and their parents.</span></p></div><div><h3>Methods</h3><p>We surveyed AYAs with cancer (<em>n</em> = 75) and their parents (<em>n</em><span> = 52) 6 months after receiving GS results through the Texas KidsCanSeq study. We analyzed AYAs’ DM role in GS research enrollment and their satisfaction with that role. We compared AYAs’ and parents’ self-reported understanding of, attitudes toward, and perceived utility of the AYA’s GS results.</span></p></div><div><h3>Results</h3><p><span>Most AYAs reported equally sharing DM with their parents (55%) or leading DM (36%) about GS research. Compared with their cancer care DM role, 56% of AYAs reported the same level of involvement in GS research DM, whereas 32% were more involved, and 13% were less involved (</span><em>P</em> = .011). AYAs were satisfied (99%) with their DM role regarding GS study participation. AYAs and parents had similar self-reported understanding of, attitudes toward, and perceived utility of the GS results.</p></div><div><h3>Conclusion</h3><p>Our results support engaging AYAs in DM about GS research and provide insights into AYAs’ DM preferences and positive attitudes toward GS.</p></div>","PeriodicalId":12717,"journal":{"name":"Genetics in Medicine","volume":"26 8","pages":"Article 101168"},"PeriodicalIF":6.6000,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents\",\"authors\":\"\",\"doi\":\"10.1016/j.gim.2024.101168\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Purpose</h3><p>Professional guidelines recommend engaging adolescents and young adults (AYAs) in medical decision making<span><span> (DM), including whether to undergo genomic sequencing (GS). We explored </span>DM around GS and attitudes after return of GS results among a diverse group of AYAs with cancer and their parents.</span></p></div><div><h3>Methods</h3><p>We surveyed AYAs with cancer (<em>n</em> = 75) and their parents (<em>n</em><span> = 52) 6 months after receiving GS results through the Texas KidsCanSeq study. We analyzed AYAs’ DM role in GS research enrollment and their satisfaction with that role. We compared AYAs’ and parents’ self-reported understanding of, attitudes toward, and perceived utility of the AYA’s GS results.</span></p></div><div><h3>Results</h3><p><span>Most AYAs reported equally sharing DM with their parents (55%) or leading DM (36%) about GS research. Compared with their cancer care DM role, 56% of AYAs reported the same level of involvement in GS research DM, whereas 32% were more involved, and 13% were less involved (</span><em>P</em> = .011). AYAs were satisfied (99%) with their DM role regarding GS study participation. AYAs and parents had similar self-reported understanding of, attitudes toward, and perceived utility of the GS results.</p></div><div><h3>Conclusion</h3><p>Our results support engaging AYAs in DM about GS research and provide insights into AYAs’ DM preferences and positive attitudes toward GS.</p></div>\",\"PeriodicalId\":12717,\"journal\":{\"name\":\"Genetics in Medicine\",\"volume\":\"26 8\",\"pages\":\"Article 101168\"},\"PeriodicalIF\":6.6000,\"publicationDate\":\"2024-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Genetics in Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S1098360024001023\",\"RegionNum\":1,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Genetics in Medicine","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S1098360024001023","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}

引用次数: 0

摘要

目的专业指南建议让青少年参与医疗决策（DM），包括是否进行基因组测序（GS）。方法我们通过德克萨斯州 KidsCanSeq 研究调查了患有癌症的青少年（75 人）及其父母（52 人）在收到基因组测序结果 6 个月后的情况。我们分析了青少年在 GS 研究注册中的 DM 角色以及他们对这一角色的满意度。我们比较了亚裔美国人和父母自我报告的对亚裔美国人基因组学研究结果的理解、态度和感知效用。结果大多数亚裔美国人报告说，他们与父母平等分享基因组学研究（55%）或领导基因组学研究（36%）。与他们在癌症护理方面的 DM 角色相比，56% 的亚裔报告说，他们参与 GS 研究 DM 的程度相同，32% 的亚裔参与程度较高，13% 的亚裔参与程度较低（P = .011）。青少年对他们在参与 GS 研究方面所扮演的 DM 角色表示满意（99%）。亚裔美国人和家长对 GS 结果的自我报告理解、态度和感知效用相似。结论我们的结果支持亚裔美国人参与有关 GS 研究的 DM，并提供了有关亚裔美国人 DM 偏好和对 GS 积极态度的见解。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

查看原文本刊更多论文

Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents

Purpose

Professional guidelines recommend engaging adolescents and young adults (AYAs) in medical decision making (DM), including whether to undergo genomic sequencing (GS). We explored DM around GS and attitudes after return of GS results among a diverse group of AYAs with cancer and their parents.

Methods

We surveyed AYAs with cancer (n = 75) and their parents (n = 52) 6 months after receiving GS results through the Texas KidsCanSeq study. We analyzed AYAs’ DM role in GS research enrollment and their satisfaction with that role. We compared AYAs’ and parents’ self-reported understanding of, attitudes toward, and perceived utility of the AYA’s GS results.

Results

Most AYAs reported equally sharing DM with their parents (55%) or leading DM (36%) about GS research. Compared with their cancer care DM role, 56% of AYAs reported the same level of involvement in GS research DM, whereas 32% were more involved, and 13% were less involved (P = .011). AYAs were satisfied (99%) with their DM role regarding GS study participation. AYAs and parents had similar self-reported understanding of, attitudes toward, and perceived utility of the GS results.

Conclusion

Our results support engaging AYAs in DM about GS research and provide insights into AYAs’ DM preferences and positive attitudes toward GS.

求助全文

通过发布文献求助，成功后即可免费获取论文全文。去求助

来源期刊

Genetics in Medicine 医学-遗传学

CiteScore

15.20

自引率

6.80%

发文量

857

审稿时长

1.3 weeks

期刊介绍： Genetics in Medicine (GIM) is the official journal of the American College of Medical Genetics and Genomics. The journal''s mission is to enhance the knowledge, understanding, and practice of medical genetics and genomics through publications in clinical and laboratory genetics and genomics, including ethical, legal, and social issues as well as public health. GIM encourages research that combats racism, includes diverse populations and is written by authors from diverse and underrepresented backgrounds.