Projects / Programmes
Development of indicators and methodology for monitoring the late effects of cancer treatment in childhood at national level
| Code |
Science |
Field |
Subfield |
| 3.04.00 |
Medical sciences |
Oncology |
|
| Code |
Science |
Field |
| B007 |
Biomedical sciences |
Medicine (human and vertebrates) |
| Code |
Science |
Field |
| 3.02 |
Medical and Health Sciences |
Clinical medicine |
late effects of cancer treatment, childhood cancer, clinical registry, cancer registry, oncological rehabilitation, national cancer control plan
Researchers (15)
Organisations (1)
| no. |
Code |
Research organisation |
City |
Registration number |
No. of publicationsNo. of publications |
| 1. |
0302 |
Institute of Oncology Ljubljana |
Ljubljana |
5055733000 |
0 |
Abstract
BACKGROUND
The outcome of treatment is improving for many cancers. Thus, it is becoming increasingly important to ensure patients retain a high quality of life. An increasing number of patients survive long after cancer treatment though they may be significantly hindered in their daily life due to late effects of cancer itself and/or its treatment. Through the National Cancer Control Program, Slovenia has committed to ensuring comprehensive rehabilitation for all oncological patients. However, a national strategy for comprehensive rehabilitation for all cancer patients in Slovenia has not been established yet.
Studies have shown that most patients treated for cancer in childhood will suffer from treatment related late effects and will have greater morbidity compared to their peers. Late effects of chemotherapy, radiotherapy and/or surgery are more pronounced in children as they are still growing and developing during treatment, while cumulative risk increases over time. At the Institute of Oncology Ljubljana, as part of the Infrastructure Program IP0302 project financed by the ARRS, we are tracking and analysing the late effects of cancer treatment in childhood and adolescence. Surveillance of patients showed that after more than 20 years of follow-up, 70% of those treated for cancer in childhood experienced one or more somatic effects, and 4% of adolescents died due to these late effects. Furthermore, the Pan-European Network for the Care of Survivors after Childhood and Adolescent Cancer (PanCare) highlights the need for surveillance during the transition period from paediatric to adult health-care systems and the need for a structured long-term follow-up of childhood cancer survivors as an important aspect of cancer survivor care and rehabilitation.
AIMS AND OBJECTIVES
The main aim of the project is to establish a national system for monitoring the late effects of childhood cancer treatment. The specific objectives of the project are:
• to gather, review and, according to international recommendations, harmonize the definitions of indicators concerning the late effects of childhood cancer treatment;
• to establish a national registry of late effects of childhood cancer treatment within the framework of the Slovenian Cancer Registry and define its data sources;
• to estimate the prevalence of late effects of cancer treatment and next primary cancers in the Slovenian childhood cancer survivor population and assess the extent of health services that they will need during their adulthood;
• to propose, based on study findings, a national plan for the surveillance of late effects of cancer treatment in adult cancer patients.
SCOPE
As part of the study, we will prepare a matrix of late effects of childhood cancer treatment and propose a set of appropriate indicators to evaluate their burden in the Slovenian population. Within the Slovenian Cancer Registry, we will establish a childhood cancer clinical registry (KrOt) and introduce a module for recording late effects (RRPoPo). KrOt is crucial and necessary for the operation of RRPoPo, since it is essential to first register the parameters of the disease and treatments that could lead to late effects.
Initially, we will identify the sources of input data for both new registries. KrOt will be tested utilizing the data on the 2018 incidence of childhood cancers. Into the RRPoPo we will migrate the data on the late effects of cancer treatment from the existing cohort followed at the Institute of Oncology Ljubljana.
Throughout the project, we will inform the professional community of the study aims, goals, and results. We plan to present results via participation at expert meetings, publishing several professional and original scientific articles and a doctoral thesis. On the basis of the research results we will formulate and propose recommendations to policy makers for the surveillance of late effects of cancer treatment
Significance for science
The project is of atmost importance for quality control and further development of Slovenian oncological health care system. Results and conclusions of the proposed project will contribute to the advancements in science and numerous professions (oncology, paediatrics, public health). The most important contributions are:
1. Development of definitions of indicators concerning the late effects of childhood cancer treatment.
2. An overview of the scope of the national burden of paediatric cancers and their management.
3. Identification of Slovenian survivor groups diagnosed with cancer in the childhood in time when it is possible to improve the disease outcomes and reduce the consequences of treatment through appropriate systemic actions.
4. Development of specific proposals to implement national surveillance of late effects of cancer treatment in adult cancer patients.
We expect our final results to importantly contribute to realisation of the Slovenian National Cancer Control Program (NCCP) goals for 2017-2021; the principal national document by which the Slovenian health profession and policy makers intend to reduce the number of new cancers and improve the quality of life and the survival of cancer patients. NCCP actively supports the proposed project.
Significance for the country
The project will have a significant impact on the economy. Due to its objectives it will achieve:
1. More effective and systemic management of late effects of cancer treatment in childhood.
2. Reduced costs of diagnostics and treatment.
3. Decreased absenteeism in active working population.
From both, the economic and social, aspects the greatest importance of the proposed project is improving the systemic management of late effects of cancer treatment in childhood. Numerous studies show that as many as two thirds of patients have one or more late effects of cancer treatment in childhood and a 6-fold increase in the incidence of other primary cancers compared to their peers. Regular, lifelong follow-up of these survivors is necessary for the early diagnosis of late consequences and their timely treatment. It has been proven that the timely detection and management of the late effects of cancer treatment improves the quality of life, increases the chances for finishing education process, improves employment options, and in the long run reduces absenteeism and the need for health services.
Most important scientific results
Annual report
2020
Most important socioeconomically and culturally relevant results
Annual report
2020
