PI: Dr. Henrike Karim-Kos
Childhood cancer surveillance
Cancer surveillance provides interesting information for and can be used in the development and evaluation of new interventions in two domains: a) the public health domain (population-level) focusing on primary and secondary prevention, and b) the clinical domain (patient-level) focusing on quality of care, prognosis and quality of life. Progress made in one or both domains can be assessed by standard surveillance measures: incidence, stage at diagnosis, survival and mortality. These measures are comparable on an international level and are available for the Netherlands since the 1990s.
In pediatric oncology, the largest intervention in the Netherlands has been concentration of care in one single center as of 2018, namely the Princess Máxima Center for pediatric oncology, with the ambition to improve the outcome of childhood cancer. It is important to investigate the effect of this centralisation on quality of care and ‘cure’ in the future. Therefore, information on the prior situation is fundamental. Evaluation of pediatric cancer care, focusing on both the past and the future, is one of the main goals of our research group.
Our current research programs focus on:
- Epidemiology of high grade brain tumors in children and treatment outcomes.
Brain tumors are the most common solid tumors in children and around 50% of these tumors are classified as high-grade. Pediatric high-grade brain tumors are among the most devastating childhood cancers, associated with dismal survival outcomes and high morbidity rates. Underlying reasons for these poor survival outcomes are the aggressive nature of these tumors and the limited treatment options.
Until now, scientific knowledge regarding prognostic factors in high-grade brain tumors in children is limited to tumor biology and basic clinical information. Therefore, it is difficult to predict survival of children with a high-grade brain tumor.
By using population-based epidemiological data and combining this with additional clinical and biological information, we hope to gain insight into the relationship between tumor characteristics, diagnostics, treatment strategies and survival outcomes. To date, no integrative approach has been used that takes all these factors into account. The results of this project will ultimately lead to a better understanding and prediction of survival in children with a high-grade brain tumor.
- Time trends in incidence and survival outcomes of renal tumors in children
Malignant renal tumors are one of the most common solid tumors diagnosed in children below the age of 5 years. The large majority (90%) of renal tumors in children are Wilms tumors (WT) with an age-standardised incidence rate of about 8 per million person-years in high-income countries. Although most patients with WT have a favorable prognosis, survival of WT seems to have stabilized in Europe since the early 2000s.
In the past, two main approaches existed for the treatment of pediatric renal tumors in the Netherlands, namely the Children’s Oncology Group (COG) and the International Society of Pediatric Oncology (SIOP) protocols, which differ regarding the timing of nephrectomy.
In this project, we describe trends in incidence, survival, and mortality of pediatric renal tumors in the Netherlands between 1990-2014 to provide an historical view on the progress made. This will also serve as a baseline measurement for future evaluations of renal tumor care.
This project is performed in close collaboration with the research group of prof. Van den Heuvel-Eibrink.
- Time trends in incidence and survival outcomes of soft tissue and bone sarcomas.
Soft tissue and bone sarcomas are the second most common type of solid tumors in children comprising about 10% of all pediatric malignancies. Until now, no comprehensive national trend analyses on trends in these tumors have been performed.
In this project, we describe trends in incidence, stage at diagnosis, treatment, and survival outcomes of sarcomas in the Netherlands since the 1990s to provide an historical view on the progress made. Findings of this project will serve as a backbone for future research and evaluations.
This project is performed in close collaboration with the research group of dr. Merks.
- International comparisons of surveillance measures.
Our research group is active in international comparative studies on surveillance measures. Our collaborative network consists of various European Cancer Registries and the International Agency for Research on Cancer (IACR), Lyon.
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Outcome disparities between children and young adults with cancer
For several cancer types, adolescents and young adults (AYAs, 18-39 years) have a worse prognosis compared to pediatric patients (0-17 years). The exact reasons for the inferior outcomes of AYAs with cancer are, however, still not clear. Notably, in the context of the Netherlands, possible causes have hardly been studied at all. The focus of our research group is to determine factors contributing to the outcome disparities between AYAs and children diagnosed with cancer.
Our current research program focuses on:
- Reducing survival disparities between pediatric, adolescent, and young adult patients with acute lymphoblastic leukemia and acute myeloid leukemia (SURVGAP ALL/AML)
Adolescents and young adults (AYAs) with acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML) have a worse survival than pediatric patients. Use of pediatric instead of adult regimens in AYA ALL has been shown to improve outcome and pediatric inspired-protocols have been introduced for patients aged ≤40 years in the Netherlands since 2005. However, a “survival gap” remains. Regarding AML, the survival gap is even increasing in recent years.
In this project, we examine factors contributing to the survival disparity between AYAs and children diagnosed with ALL and AML in the Netherlands by combining existing population-based and trial databases with additional molecular analyses/cytogenetic testing.
This project is performed in close collaboration with prof. Vormoor (Princess Máxima Center for pediatric oncology), prof. Raaijmakers and dr. Rijneveld (both from HOVON / ErasmusMC), and hemato-oncologists from UMC Utrecht.
- Schulpen M, Visser O, Reedijk AMJ, Kremer LCM, Zwaan CM, Eggermont AMM, Coebergh JW, Pieters R, Karim-Kos HE. Significant improvement in survival of advanced stage childhood and young adolescent cancer in the Netherlands since the 1990s (2021). European Journal of Cancer 157: 81-93. Pubmed PMID: 34492587
- Reedijk AMJ, Kremer LC, Visser O, Lemmens V, Pieters R, Coebergh JWW, Karim-Kos HE. Increasing incidence of cancer and stage migration towards advanced disease in children and young adolescents in the Netherlands, 1990-2017 (2020). European Journal of Cancer 134: 115-126. Pubmed PMID: 32521425
- Reedijk AMJ, van der Heiden-van der Loo M, Visser O, Karim-Kos HE, Lieverst JA, de Ridder-Sluiter JG, Coebergh JWW, Kremer LC, Pieters R. Site of childhood cancer care in the Netherlands (2017). European Journal of Cancer 87: 38-46. Pubmed PMID: 29107860
- Karim-Kos HE, Kiemeney LA, Louwman MW, Coebergh JW, de Vries E. Progress against cancer in the Netherlands since the late 1980s: an epidemiological evaluation (2012). International Journal of Cancer 130(12): 2981-2989. Pubmed PMID: 21792900
- de Vries E, Karim-Kos HE, Janssen-Heijnen ML, Soerjomataram I, Kiemeney LA, Coebergh JW. Explanations for worsening cancer survival (2010). Nature Reviews Clinical Oncology 7(1):60-63. Pubmed PMID: 20029445