DataSheet_1_Estimating complete cancer prevalence in Europe: validity of alternative vs standard completeness indexes.docx

IntroductionComparable indicators on complete cancer prevalence are increasingly needed in Europe to support survivorship care planning. Direct measures can be biased by limited registration time and estimates are needed to recover long term survivors. The completeness index method, based on incidence and survival modelling, is the standard most validated approach.MethodsWithin this framework, we consider two alternative approaches that do not require any direct modelling activity: i) empirical indices derived from long established European registries; ii) pre-calculated indices derived from US-SEER cancer registries. Relying on the EUROCARE-6 study dataset we compare standard vs alternative complete prevalence estimates using data from 62 registries in 27 countries by sex, cancer type and registration time.ResultsFor tumours mostly diagnosed in the elderly the empirical estimates differ little from standard estimates (on average less than 5% after 10-15 years of registration), especially for low prognosis cancers. For early-onset cancers (bone, brain, cervix uteri, testis, Hodgkin disease, soft tissues) the empirical method may produce substantial underestimations of complete prevalence (up to 20%) even when based on 35-year observations. SEER estimates are comparable to the standard ones for most cancers, including many early-onset tumours, even when derived from short time series (10-15 years). Longer observations are however needed when cancer-specific incidence and prognosis differ remarkably between US and European populations (endometrium, thyroid or stomach).DiscussionThese results may facilitate the dissemination of complete prevalence estimates across Europe and help bridge the current information gaps.

在欧洲，为了支持生存期护理规划，迫切需要全面癌症发病率的相关可比指标。由于登记时间的限制，直接测量可能存在偏差，因此需要估计以恢复长期存活者的数据。基于发病率和生存模型的不完整性指数方法，是目前验证程度最高的标准方法。在此框架内，我们考虑了两种不要求任何直接建模活动的替代方法：i）从长期建立的欧洲登记机构中得出的经验指数；ii）从美国SEER癌症登记机构中得出的预先计算的指数。依托EUROCARE-6研究数据集，我们通过27个国家的62个登记机构的数据，按性别、癌症类型和登记时间，比较了标准与替代的全面发病率估计。结果显示，对于主要诊断在老年人群中的肿瘤，经验估计与标准估计差异不大（在登记10-15年后平均差异小于5%），尤其是在预后较差的癌症中。对于早发性癌症（如骨骼、大脑、子宫颈、睾丸、霍奇金病、软组织等）而言，即使基于35年的观察，经验方法也可能导致全面发病率的显著低估（高达20%）。对于大多数癌症，包括许多早发性肿瘤，即使是从短期序列（10-15年）中得出的，SEER估计与标准估计也是可比的。然而，当美国和欧洲人群在特定癌症的发病率和预后方面存在显著差异时（如子宫内膜、甲状腺或胃），则需要更长时间的观察。讨论部分指出，这些结果可能有助于促进欧洲范围内全面发病率估计的传播，并有助于弥合当前的信息差距。