研究动态
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儿童癌症精准医学试验中的期望、关切、满意度和后悔:基于家长和患者视角的混合方法研究。

Hopes, concerns, satisfaction and regret in a precision medicine trial for childhood cancer: a mixed-methods study of parent and patient perspectives.

发表日期:2023 Sep 19
作者: Claire E Wakefield, Kate Hetherington, Eden G Robertson, Mark W Donoghoe, Jacqueline D Hunter, Janine Vetsch, Jonathan M Marron, Katherine M Tucker, Glenn M Marshall, Alexander Broom, Michelle Haber, Vanessa Tyrrell, David Malkin, Loretta Lau, Marion K Mateos, Tracey A O'Brien, David S Ziegler
来源: BRITISH JOURNAL OF CANCER

摘要:

儿童精确肿瘤学的目标是将治疗药物与驱动基因靶点相匹配。我们调查了父母和患者是否对参与精确医学试验感到后悔,特别是当他们的希望没有实现时。父母和青少年患者在试验入组时(T0)和接收结果后(T1)填写了问卷。父母选择在T1时进行面试。丧子父母在丧子后6个月(T1B)填写了问卷。我们使用R分析了定量数据,并使用NVivo进行了定性数据的主题分析,然后将所有数据整合用于解释。182名父母和23名患者完成了T0;108/182名父母和8/23名患者完成了T1;27/98名丧子父母完成了T1B;45/108名父母接受了面试。在入组时,参与者对精确医学将使未来的孩子和他们自己的孩子受益怀有希望。参与者对于结果的等待时间表示关注。大多数参与者认为试验有益且不繁重,包括丧子父母在内。参与者对试验满意度很高(中位数得分:父母:93/100;患者:80/100)。参与者表示几乎没有后悔(父母的中位数得分:父母:10/100;丧子父母:15/100;患者的后悔:2/8表示极小的后悔)。即使试验结果没有达到他们的希望,父母和患者在参与儿童癌症精确医学试验方面也很少后悔。这些数据对于将参与者的观点纳入未来精确医学的实施至关重要。© 2023. 作者。
Paediatric precision oncology aims to match therapeutic agents to driver gene targets. We investigated whether parents and patients regret participation in precision medicine trials, particularly when their hopes are unfulfilled.Parents and adolescent patients completed questionnaires at trial enrolment (T0) and after receiving results (T1). Parents opted-in to an interview at T1. Bereaved parents completed a questionnaire 6-months post-bereavement (T1B). We analysed quantitative data with R and qualitative data thematically with NVivo, before integrating all data for interpretation.182 parents and 23 patients completed T0; 108/182 parents and 8/23 patients completed T1; 27/98 bereaved parents completed T1B; and 45/108 parents were interviewed. At enrolment, participants held concurrent hopes that precision medicine would benefit future children and their child. Participants expressed concern regarding wait-times for receipt of results. Most participants found the trial beneficial and not burdensome, including bereaved parents. Participants reported high trial satisfaction (median scores: parents: 93/100; patients: 80/100). Participants expressed few regrets (parent median scores: parents: 10/100; bereaved parents: 15/100; patient regret: 2/8 expressed minimal regret).Even when trial outcomes did not match their hopes, parents and patients rarely regretted participating in a childhood cancer precision medicine trial. These data are critical for integrating participants' views into future precision medicine delivery.© 2023. The Author(s).