Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Texas Children's Cancer Center, Texas Children's Hospital, Houston, Texas, USA.
J Adolesc Young Adult Oncol. 2023 Oct;12(5):773-781. doi: 10.1089/jayao.2022.0066. Epub 2023 Jan 2.
With increased use of genomic testing in cancer research and clinical care, it is important to understand the perspectives and decision-making preferences of adolescents and young adults (AYAs) with cancer and their treating oncologists. We conducted an interview substudy of the BASIC3 Study, which enrolled newly diagnosed cancer patients <18 years of age with assent. Of 32 young adults (YAs) with cancer who reached the age of majority (AOM; 18 years) while on study, 12 were successfully approached and all consented to study continuation at AOM. Of those, seven completed an interview. Patients' oncologists, who enrolled and participated in return of clinical genomic results, were also interviewed ( = 12). Interviews were transcribed, deidentified, and analyzed using thematic analysis. YAs cited the possibility of helping others and advancing science as major reasons for their assent to initial study enrollment and their willingness to consent at AOM. YAs thought obtaining informed consent from research participants for study continuation at AOM was a good idea in case they changed their minds or wanted to make their own decisions, and to keep them aware of study activities. There was diversity in what YAs understood and learned from genomic testing: some recalled specific findings, while some remembered minimal information about their results. Oncologists varied in their assessment of adolescents' engagement with the study and understanding of their results. Given the different ways AYAs engage with genomic information, careful assessment of AYAs' diverse communication and decision-making preferences is needed to tailor interactions accordingly.
随着基因组检测在癌症研究和临床护理中的应用日益增多，了解癌症青少年和年轻人（AYAs）及其治疗肿瘤学家的观点和决策偏好非常重要。我们对 BASIC3 研究进行了访谈子研究，该研究招募了同意的年龄在 18 岁以下的新发癌症患者。在研究期间达到法定成年年龄（18 岁）的 32 名癌症青年（YAs）中，有 12 名成功接触并同意在法定成年年龄继续研究。其中 7 人完成了访谈。招募并参与临床基因组结果回报的患者肿瘤学家也接受了访谈（ = 12）。使用主题分析对访谈进行转录、去识别和分析。YAs 将帮助他人和推进科学的可能性作为同意初始研究入组和愿意在法定成年年龄同意的主要原因。YAs 认为，在法定成年年龄获得研究参与者的同意，以继续进行研究是一个好主意，以防他们改变主意或想要自己做决定，并让他们了解研究活动。YAs 对基因组检测的理解和学习方式存在差异：有些人回忆起特定的发现，而有些人则记得有关其结果的最少信息。肿瘤学家对青少年参与研究和对其结果的理解的评估各不相同。鉴于 AYAs 以不同的方式与基因组信息互动，需要仔细评估 AYAs 多样化的沟通和决策偏好，以便相应地调整互动方式。
