Registration, incidence patterns, and survival trends of central nervous system tumors among children in Germany 1980-2019: An analysis of 40 years based on data from the German Childhood Cancer Registry.

BACKGROUND: Tumors of the central nervous system (CNS) are the second most common type of pediatric cancer in Germany. We aimed to describe registration practice, incidence, and survival patterns for childhood CNS tumors in Germany for the past 40 years. PROCEDURE: Including all CNS tumor cases in children diagnosed at ages 0-14 years registered at the German Childhood Cancer Registry (GCCR) in 1980-2019 (for survival analysis 1980-2016), we calculated age-specific and age-standardized incidence rates (ASIR) over time, average annual percentage changes (AAPC), and 1- and 5-year overall survival. RESULTS: While we observed a pronounced increase in ASIR after the establishment of the GCCR during the 1980s, ASIR for all pediatric CNS tumors combined continued to increase markedly from 28.6 per million in 1990-1999 to 43.3 in 2010-2019 (AAPC = 2.7% in 1991-2010, AAPC = 0.3% in 2010-2019). The 5-year overall survival from CNS tumors improved from 63% in the 1980s, 70% in the 1990s to 79% in 2010-2016. These improvements have occurred across all age groups. Children diagnosed with ependymomas and choroid plexus tumors experienced the strongest increase (from 54% to 81%). CONCLUSIONS: Observed increases in incidence rates for pediatric CNS tumors are likely only partially caused by actual increasing case numbers. The majority is a function of improved registration and, to a minor extent, improvements in diagnostics. Survival from pediatric CNS tumors has, by and large, improved consistently, leading to a growing population of childhood cancer survivors with diverse health biographies and risk of lifelong adverse impact on health and wellbeing.

Temporal patterns of childhood cancer survival 1991 to 2016: A nationwide register-study based on data from the German Childhood Cancer Registry.

Childhood cancer is the leading disease-related cause of death among under 15 year olds in Europe. Since primary preventive measures are lacking, improving survival probabilities and long-term well-being remain primary goals. With this report, we provide the first long-term assessment and interpretation of patterns in childhood cancer survival in Germany, covering a period of 30 years. Using data from the German Childhood Cancer Registry, we assessed temporal patterns of cancer survival among children (0-14 years) diagnosed in Germany from 1991 to 2016, by cancer type, age at diagnosis and sex. We calculated overall survival (OS) and average annual percentage changes of the respective 5-year OS estimates. OS improved across all cancer types, age groups as well as for boys and girls over time. Five-year OS for all childhood cancers combined increased from 77.8% in 1991-1995 to 86.5% in 2011-2016, with stronger improvements during the early 1990s. The most pronounced survival improvement was seen for acute myeloid leukaemia, at 2% annually and 5-year OS recently reaching 81.5%. Survival improvements for some diagnoses such as neuroblastoma, renal tumours and bone tumours have flattened out. Tremendous enhancements in diagnostics, treatment and supportive care have affected average survival improvements for most cancer types. Recently, survival improvements have decelerated overall and for some cancer types, it plateaued at an unsatisfactory level. As not all children benefited equally from the survival improvements, personal factors (eg, socioeconomic circumstances, health literacy, access to care) likely affect individual prognosis and warrant further investigation.

Impact of the COVID-19 pandemic on incidence, time of diagnosis and delivery of healthcare among paediatric oncology patients in Germany in 2020: Evidence from the German Childhood Cancer Registry and a qualitative survey.

BACKGROUND: The indirect impact of the COVID-19 pandemic on cancer care and timely diagnosis is of increasing concern. We investigated the impact of the COVID-19 pandemic on incidence, time of diagnosis and delivery of healthcare among paediatric oncology patients in Germany in 2020. METHODS: We analysed incident paediatric cancer cases diagnosed in 0- to 17-year olds in Germany in 2020 using data of the German Childhood Cancer Registry. Absolute numbers and age-standardised incidence rates (ASR) in 2020 were compared to the previous five years (2015-2019). Moreover, we conducted a survey with open-ended questions, gathering perceptions of the diagnostic process and healthcare delivery for paediatric oncology patients during the COVID-19 pandemic. FINDINGS: More or similar numbers of paediatric cancer patients were newly diagnosed each month throughout 2020 in comparison to the previous five years. The estimated ASRs showed markedly higher incidence rates, overall and across diagnostic groups, in 2020 compared to 2015-2019. Results from the qualitative survey indicated that diagnostic processes, timeliness of diagnosis, and delivery of treatment were hardly affected during the COVID-19 pandemic. However, psychosocial supportive care and non-urgent appointments were considerably reduced during the lockdown periods. INTERPRETATION: We found no indications of severe adverse effects of the COVID-19 pandemic on diagnosis and delivery of healthcare among children with cancer in Germany. The underlying reasons of the increase in incidence rates remain speculative. Continued close monitoring of incidence patterns may shed light on the underlying reasons of the present increase and contribute to understanding disease aetiology. FUNDING: None.

28-year incidence and time trends of childhood leukaemia in former East Germany compared to West Germany after German reunification: A study from the German Childhood Cancer Registry.

BACKGROUND: The aetiology of childhood leukaemia is largely unknown. Analyses of geographical differences may enhance aetiologic insights. The reunification of Germany in 1990 provides a unique opportunity to evaluate incidence patterns and time trends in two merging countries with substantial lifestyle, social and socioeconomic differences. With this study we provide an extensive assessment of 28-year incidence patterns and temporal trends after the German reunification. METHODS: We identified all children diagnosed with a lymphoid leukaemia (LL) or acute myeloid leukaemia (AML) before the age of 15 years between 1991 and 2018 using the German Childhood Cancer Registry (N = 14,922), and evaluated the incidence pattern and temporal trends in former East Germany compared to West Germany by subtype, age at diagnosis and sex. RESULTS: Incidence rates of LL were substantially lower (around 20 %) in Eastern Germany compared to Western Germany at the time of reunification. This was followed by a remarkable increase in Eastern Germany across both sexes and age groups until around 2000, when incidence rates reached the same levels as those in Western German federal states. Thereafter, incidence rates remained rather stable with some indications of a slightly decreasing tendency in both Eastern and Western Germany (estimated annual percentage changes (EAPC) 2005-2018: East Germany = -0.8 %; West Germany = -0.4 %), driven by the 0- to 4-year olds. Overall, AML incidence rates were stable over time in Western Germany, while EAPC for Eastern Germany indicated an increasing tendency (EAPC 1991-2018 = 1.3 %) driven by the older children, mostly during the early 2000s and in most recent years. CONCLUSION: The underlying mechanisms driving the childhood leukaemia rates remain inconclusive. Linkage studies including individual and clinical data would be valuable in evaluating the impact of a population's social, socioeconomic and lifestyle changes on the risk of childhood leukaemia and disease aetiology overall.