Swiss Childhood Cancer Registry, University of Bern, Bern, Switzerland.
Pediatr Blood Cancer. 2010 May;54(5):721-7. doi: 10.1002/pbc.22426.
Specialized pediatric cancer centers (PCCs) are thought to be essential to obtain state-of-the-art care for children and adolescents. We determined the proportion of childhood cancer patients not treated in a PCC, and described their characteristics and place of treatment.
The Swiss Childhood Cancer Registry (SCCR) registers all children treated in Swiss PCCs. The regional cancer registries (covering 14/26 cantons) register all cancer patients of a region. The children of the SCCR with data from 7 regions (11 cantons) were compared, using specialized software for record linkage. All children <16 years of age at diagnosis with primary malignant tumors, diagnosed between 1990 and 2004, and living in one of these regions were included in the analysis.
22.1% (238/1,077) of patients recorded in regional registries were not registered in the SCCR. Of these, 15.7% (169/1,077) had never been in a PCC while 6.4% (69/1,077) had been in a PCC but were not registered in the SCCR, due to incomplete data flow. In all diagnostic groups and in all age groups, a certain proportion of children was treated outside a PCC, but this proportion was largest in children suffering from malignant bone tumors/soft tissue sarcomas and from malignant epithelial neoplasms, and in older children. The proportion of patients treated in a PCC increased over the study period (P < 0.0001).
One in six childhood cancer patients in Switzerland was not treated in a PCC. Whether these patients have different treatment outcomes remained unclear.
专门的儿科癌症中心（PCC）被认为对于儿童和青少年获得最先进的治疗至关重要。我们确定了未在 PCC 接受治疗的儿童癌症患者的比例，并描述了他们的特征和治疗地点。
瑞士儿童癌症登记处（SCCR）登记了所有在瑞士 PCC 接受治疗的儿童。区域癌症登记处（覆盖 26 个州中的 14 个）登记了该地区的所有癌症患者。使用专门的记录链接软件，对 SCCR 中来自 7 个地区（11 个州）的数据进行了比较。所有在诊断时年龄<16 岁的儿童患有原发性恶性肿瘤，在 1990 年至 2004 年间诊断，并居住在这些地区之一，都被纳入分析。
在区域登记处记录的 22.1%（238/1,077）的患者未在 SCCR 中登记。其中，15.7%（169/1,077）从未去过 PCC，而 6.4%（69/1,077）去过 PCC，但由于数据传输不完整而未在 SCCR 中登记。在所有诊断组和所有年龄组中，一定比例的儿童在 PCC 之外接受治疗，但在患有恶性骨肿瘤/软组织肉瘤和恶性上皮肿瘤以及年龄较大的儿童中，这一比例最大。在研究期间，在 PCC 接受治疗的患者比例有所增加（P<0.0001）。
瑞士六分之一的儿童癌症患者未在 PCC 接受治疗。这些患者的治疗结果是否不同仍不清楚。
