Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
School of Women's and Children's Health, UNSW Sydney, Sydney, New South Wales, Australia.
Pediatr Blood Cancer. 2018 Apr;65(4). doi: 10.1002/pbc.26923. Epub 2017 Dec 29.
There is growing impetus for increased genetic screening in childhood cancer survivors. Family history-taking is a critical first step in determining survivors' suitability. However, the family history-taking practices of providers of pediatric oncology survivorship care and the confidence of these providers to discuss cancer risks to relatives are unknown.
Fifty-four providers completed semistructured interviews in total, which included eight tertiary providers representing nine hospitals across two countries (63% male, 63% oncologists, 37% nurses) and 46 primary care providers (PCPs) nominated by a survivor (59% male, 35% regional practice). We used content analysis and descriptive statistics/regression to analyze the data.
Few tertiary (38%) or primary (35%) providers regularly collected survivors' family histories, often relying on survivors/parents to initiate discussions. Providers mostly took two-generation pedigrees (63% tertiary and 81% primary). Primary providers focused on adult cancers. Lack of time, alternative priorities, and perceived lack of relevance were common barriers. Half of all tertiary providers felt moderately comfortable discussing genetic cancer risk to children of survivors (88% felt similarly discussing risks to other relatives). Most primary providers lacked confidence: 41% felt confident regarding risks to survivors' children and 48% regarding risks to other relatives.
While family history-taking will not identify all survivors suitable for genetics assessment, recommendations for regular history-taking are not being implemented in tertiary or primary care. Additional PCP-targeted genetic education is warranted given that they are well placed to review family histories of pediatric cancer survivors.
儿童癌症幸存者的遗传筛查需求日益增长。采集家族史是确定幸存者是否适合进行遗传评估的关键第一步。然而，儿科肿瘤学生存者护理提供者采集家族史的实践情况，以及这些提供者与亲属讨论癌症风险的信心尚不清楚。
共有 54 名提供者完成了半结构化访谈，其中包括来自两个国家九家医院的 8 名三级提供者（63%为男性，63%为肿瘤学家，37%为护士）和 46 名由幸存者提名的初级保健提供者（PCP）（59%为男性，35%为区域实践）。我们使用内容分析和描述性统计/回归分析来分析数据。
很少有三级（38%）或初级（35%）提供者定期采集幸存者的家族史，通常依赖幸存者/父母来发起讨论。提供者主要绘制两代系谱（63%的三级提供者和 81%的初级提供者）。初级提供者主要关注成人癌症。缺乏时间、其他优先事项和感知的相关性缺乏是常见的障碍。一半的三级提供者对讨论幸存者子女的遗传癌症风险感到中等舒适（88%对讨论其他亲属的风险感到类似）。大多数初级提供者缺乏信心：41%对幸存者子女的风险有信心，48%对其他亲属的风险有信心。
虽然家族史采集并不能确定所有适合接受遗传评估的幸存者，但在三级或初级保健中并未实施定期采集家族史的建议。鉴于初级保健提供者非常适合审查儿科癌症幸存者的家族史，因此需要对他们进行额外的以 PCP 为目标的遗传教育。
