Petersen Imme, Kaatsch Peter, Spix Claudia, Kollek Regine
Hamburg University, Research Centre for Biotechnology, Society and the Environment, Research Group on Medicine and Neurosciences, Hamburg, Germany.
German Childhood Cancer Registry, Institute of Medical Biostatistics, Epidemiology and Informatics, Johannes Gutenberg University Mainz, Mainz, Germany.
J Pediatr. 2017 Dec;191:232-237. doi: 10.1016/j.jpeds.2017.08.008. Epub 2017 Sep 29.
To explore parental attitudes regarding the return and disclosure of research findings in pediatric cancer trials over time.
Two surveys were set up to evaluate the stability of parental attitudes. One survey was carried out among 581 parents whose child was diagnosed recently (response rate, 53.5%). A second, population-based survey was set up with a time interval of 4 years between first cancer diagnosis and survey in which 1465 parents were included (response rate, 55.1%).
Almost all surveyed parents stated a parental right to receive aggregate research results. Fifty-five percent of the parents who recently participated in trials and 62% of those asked after a multiyear time interval thought that disclosure of individual findings is in any case necessary (P = .0034). The respondents wanted to restrict the duty to disclose study results to the child according to their notion of the child's well-being, composed of child's maturity, impairment of the parent-child relationship, and the quality of the results.
Attitudes of parents regarding the return of research findings change over time. Shortly after diagnosis, parents are mainly interested in aggregate findings. Interest in individual findings appeared to increase as more time elapsed between cancer diagnosis and survey.
探讨随着时间推移，父母对儿科癌症试验研究结果的反馈及披露的态度。
开展两项调查以评估父母态度的稳定性。一项调查针对581名其子女近期被诊断出癌症的父母进行（回应率为53.5%）。第二项基于人群的调查在首次癌症诊断与调查之间设置了4年的时间间隔，共有1465名父母参与（回应率为55.1%）。
几乎所有接受调查的父母都表示父母有权获得汇总的研究结果。近期参与试验的父母中有55%，以及在多年时间间隔后接受询问的父母中有62%认为，无论如何都有必要披露个体研究结果（P = 0.0034）。受访者希望根据他们对孩子幸福的理解，将向孩子披露研究结果的责任限制在一定范围内，这种理解包括孩子的成熟度、亲子关系的损害以及结果的质量。
父母对研究结果反馈的态度会随时间变化。诊断后不久，父母主要对汇总结果感兴趣。随着癌症诊断与调查之间时间的推移，对个体研究结果的兴趣似乎有所增加。
