Development of indicators and methodology for monitoring the late effects of cancer treatment in childhood at national level

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 in adult cancer survivors.

RESULTS AND THEIR EXPECTED IMPACT

The main results of the proposed project are the establishment of a national paediatric clinical cancer registry and a national system for surveillance of late effects of cancer treatment in childhood; both within the framework of the Slovenian national cancer registry. We expect it will be feasible to directly utilize the results and findings of the proposed project in the implementation of the Slovenian National Cancer Control Program. We are confident that the findings of the project will make a key contribution to identifying and understanding current shortcomings in the surveillance of late effects of cancer treatment in Slovenian patients and the lack of comprehensive rehabilitation of oncological patients more broadly. Since the new paediatric clinical cancer registry and the module for the surveillance of the late effects of childhood cancer treatment will be established within the framework of the Slovenian national cancer registry, they will continue operating even after the completion of the proposed project.