Pediatric Cancer Biology Program, Papé Family Pediatric Research Institute, Oregon Health & Science University, Portland, OR 97239-3098, USA.
Pediatr Blood Cancer. 2013 Feb;60(2):204-9. doi: 10.1002/pbc.24320. Epub 2012 Sep 26.
More than 13,000 children annually in the United States and Canada under the age of 20 will be diagnosed with cancer at a mortality approaching 20% 1,2. Tumor samples obtained by autopsy provide an innovative way to study tumor progression, potentially aiding in the discovery of new treatments and increased survival rates. The purpose of this study was to identify barriers to autopsies and develop guidelines for requesting autopsies for research purposes.
Families of children treated for childhood cancer were referred by patient advocacy groups and surveyed about attitudes and experiences with research autopsies. From 60 interviews, barriers to autopsy and tumor banking were identified. An additional 14 interviews were conducted with medical and scientific experts.
Ninety-three percent of parents of deceased children did or would have consented to a research autopsy if presented with the option; however, only half of these families were given the opportunity to donate autopsy tissue for research. The most significant barriers were the physicians' reluctance to ask a grieving family and lack of awareness about research opportunities.
The value of donating tumor samples to research via an autopsy should be promoted to all groups managing pediatric cancer patients. Not only does autopsy tumor banking offer a potentially important medical and scientific impact, but the opportunity to contribute this Legacy Gift of autopsy tumor tissue also creates a positive outlet for the grieving family. Taking these findings into account, our multidisciplinary team has developed a curriculum addressing key barriers.
在美国和加拿大，每年有超过 13000 名 20 岁以下的儿童被诊断患有癌症，死亡率接近 20%。尸检获得的肿瘤样本为研究肿瘤进展提供了一种创新的方法，有可能帮助发现新的治疗方法和提高生存率。本研究的目的是确定尸检的障碍，并制定为研究目的请求尸检的指南。
通过患者权益组织向治疗儿童癌症的儿童的家属推荐，并对他们进行有关研究性尸检的态度和经验的调查。从 60 次访谈中，确定了尸检和肿瘤库的障碍。另外还对 14 名医学和科学专家进行了访谈。
如果有选择的机会，93%的已故儿童的父母会或已经同意进行研究性尸检；然而，只有一半的家庭有机会捐献尸检组织进行研究。最大的障碍是医生不愿意向悲痛的家庭提出要求，以及对研究机会缺乏认识。
应该向所有管理儿科癌症患者的团体宣传通过尸检向研究捐赠肿瘤样本的价值。尸检肿瘤库不仅具有潜在的重要医学和科学影响，而且提供了一个将尸检肿瘤组织作为遗产礼物捐献的积极途径，也为悲痛的家庭提供了一个积极的出口。考虑到这些发现，我们的多学科团队已经制定了一个课程，以解决关键的障碍。
