Center of Cancer and Blood Disorders, 8404Children's National Hospital, Washington, DC, USA.
Division of Genetics and Metabolism, 8404Children's National Hospital, Washington, DC, USA.
J Pediatr Hematol Oncol Nurs. 2022 May-Jun;39(3):168-177. doi: 10.1177/10434542211055999.
Pharmacogenetic (PGx) testing, a component of personalized medicine, aims to ensure treatment efficacy while reducing side effects and symptoms. Before this testing becomes routine in the pediatric oncology population, nurses need to understand the knowledge and concerns of providers, patients, and family members with regard to the timing, extent, interpretation, and incorporation of PGx testing. As part of a comprehensive PGx study (larger study) for children diagnosed with cancer, we surveyed providers and caregivers of children with cancer about their knowledge of and comfort with PGx testing. Caregivers who declined to participate in the larger PGx study were also asked to participate in the survey. Chi-square tests and a two-sample -test were used to compare variables. One hundred and two participants from the larger PGx study and 12 families who refused (response rate of 77% and 54%, respectively) as well as 29 providers (88%) completed surveys. Families not on the study were less interested in and comfortable with PGx results. Both groups were concerned about health or life insurance discrimination and payment. Providers would like support in ordering PGx testing and interpreting PGx. Providers remain wary of most PGx testing, uncomfortable with interpreting and applying the results. Families are interested in the possibilities of personalized prescribing while worried about who has access to their child's genetic information. Further education on relevant tests for providers, including nurses, and the testing process for families, including details on privacy and sharing of genetic information, appear necessary.
药物遗传学（PGx）检测是个性化医疗的一个组成部分，旨在确保治疗效果，同时减少副作用和症状。在儿科肿瘤患者中常规进行这种检测之前，护士需要了解提供者、患者和家属对 PGx 检测的时机、程度、解释和应用的知识和关注点。作为针对诊断为癌症的儿童的全面 PGx 研究（更大的研究）的一部分，我们调查了癌症儿童的提供者和照顾者对 PGx 检测的了解程度和舒适度。也邀请了拒绝参与更大的 PGx 研究的照顾者参与调查。卡方检验和两样本检验用于比较变量。来自更大的 PGx 研究的 102 名参与者和 12 个拒绝参与的家庭（分别为 77%和 54%的响应率）以及 29 名提供者（88%）完成了调查。未参与研究的家庭对 PGx 结果的兴趣较低，也不太舒服。这两个群体都担心健康或人寿保险歧视和支付问题。提供者希望在订购 PGx 检测和解释 PGx 方面得到支持。提供者仍然对大多数 PGx 检测持谨慎态度，对解释和应用检测结果感到不舒服。家庭对个性化处方的可能性感兴趣，同时担心谁可以访问他们孩子的遗传信息。需要对提供者（包括护士）进行相关检测的进一步教育，以及对家庭进行检测过程的教育，包括有关隐私和遗传信息共享的详细信息。
