The first national pediatric cancer survival study

Initiators: Dăruiește Aripi Association in partnership with the Romanian Society of Pediatric Onco-Hematology
With the technical support of: “Ion Chiricuţă” Oncological Institute Cluj-Napoca and Joint Research Center – Cancer Information Unit – European Commission

This is the first time we learned the survival chances in the cancers registered by the national pediatric oncology network in Romania.

Ths study provided a comprehensive analysis of the types of cancer that affect children, the most affected age groups, but also the geography of the cases. Such an analysis is an essential pre-requisite step in aligning with international treatment standards, so that the gaps between the survival rates of children in Romania and those in the West can be narrowed.

The study was made possible by the support of the National Register of Childhood Cancers by the Daruieste Aripi Association and was launched during the 14th Meeting of Oncology-Pediatrics in Central and South-Eastern Europe (Bucharest, October 17 2019). It is a valuable resource for health professionals, experts and public authorities, all those involved in increasing the chances of survival of children diagnosed with onco-hematological diseases in Romania. Graphic presentation of the study here.

RESULTS OF THE SURVEY ON THE SURVIVAL OF CHILDREN WITH CANCER IN ROMANIA

A. The situation of pediatric cancers

  • In Romania, about 400 new cases per year are diagnosed and treated in the pediatric oncology network,
  • Calculations based on the official reference population of Romania result in an annual incidence of about 10 cases per hundred thousand children (which most likely is underestimated due to the to an official reference population much larger than the actual one). The incidence remained constant over the last 10 years, which is an indirect indication of a complete and sustained reporting of cases each year by pediatric oncology centers in the country to the National Register of Childhood Cancers in Romania (RNCCR)
  • In the 2010-2017 period, 3708 cases were registered. Most cases are in the age group 0-4 years, and the least – in adolescents (15-19 years), a category underrepresented in the register possibly due to the fact that a significant number of cases after the age of 15 do not reach the onco-pediatric network
  • The most common tumors are leukemias (31%), followed by lymphomas and tumors of the central nervous system (16% and 14%, respectively), and bone and soft tissue tumors (7% each).

B. Survival analysis

  • All cancer cases registered in the Pediatric Oncology centers in Romania during 2010-2015 were included in the analysis. It includes both cases diagnosed and treated in Romania and cases that have been treated abroad.
  • Childhood cancer survival has steadily increased worldwide (Europe and the US) from 50% -60% in the late 1970s to around 80% in the 1990s, a level that has been maintained in recent years due to limited progress in treatment of cancers with an unfavorable prognosis (localizations in the central nervous system, bones, soft tissues, myeloid leukemia).
  • The analysis was performed in parallel by the specialists of the Biostatistics Department of the Cluj Oncological Institute and by the experts of the Joint Research Center – Cancer Information Unit of the European Commission, who reached the same results.

Results

  • The average survival of children in Romania (for all cancers) is 69.1%, in accordance with the average of the Eastern European region of 70% (Eastern European countries: Bulgaria, Hungary, Poland, Slovakia, Lithuania, Estonia, Latvia) , 10% lower than the Western European average.
  • Similar to regional and global trends, survival rates differ significantly by location (less than 60% in cancers with an unfavorable prognosis and over 80% in cancers with a favorable prognosis, eg Hodgkin’s lymphoma, retinoblastoma, tumor Wilms)
  • The East-West gap remains between 10 and 20% (depending on location) according to the EUROCARE 5 study (the most recent European cancer survival study – for cases from 1999-2007). A similar gap is between Europe and the United States (especially for locations with an unfavorable prognosis: central nervous system, bone, sarcomas)
  • The largest gap between Romania and the region’s average is registered in the case of bone tumors (43% survival rate in Romania for osteosarcoma compared to 56% of the Eastern European average, respectively 64.3% of the European average)

Conclusions

EU experts, authors of the EUROCARE study, attribute the differences in cancer survival between Eastern and Western Europe mainly to differences in resources allocated to the health system, in particular on the supply of medicines, the organization of multidisciplinary services, possible delays in diagnosis and treatment, possible difficulties in the management of therapeutic and side effects.

In Romania, the issue of cytostatic treatments supplies is always in the spotlight, both for the public and the authorities,  which recently adopted a series of measures at the central level designed to remedy the shortcomings that affect the availability of certain drugs on the market. However, in local procurement mechanisms (especially for low patient-turnover PO departments) the supply is still suffering of frequent syncope.

On the other hand, equal attention should be paid to ensuring multidisciplinary cooperation in resolving cases (especially with surgical specialties), the path of the child-adolescent-adult cancer patient (through dedicated services) and systematic support for full implementation of the recommendations in the international guidelines (standards, IT systems, logistical support for patient care, etc.).

Survival rates resulting from the case study of the National Register of Childhood Cancers in Romania globally reflect the chances of survival of children diagnosed in the pediatric oncology network in Romania both in terms of the evolution of healthcare in Romania and access to cross-border care as citizens of European Union. These results represent a first step towards our major goal of contributing to an in-depth and comprehensive analysis of the performance of the cancer care system for children with cancer in Romania.

The next step will ensure the differentiated data collection and integration in the analysis of specific information on the case circuit (in the country and / or abroad) as well as supplementation with sociological research to provide a distinct picture of the capacity and confidence in our health system. to care for children with cancer, not only in terms of chances of survival but also in terms of quality of life.

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