Challenges for children and adolescents with cancer in Europe: the SIOP-Europe agenda.

In Europe, 6,000 young people die of cancer yearly, the commonest disease causing death beyond the age of 1 year. In addition, 300,000-500,000 European citizens are survivors of a childhood cancer and up to 30% of them have severe long-term sequelae of their treatment. Increasing both cure and quality of cure are the two goals of the European paediatric haematology/oncology community. SIOPE coordinates and facilitates research, care and training which are implemented by the 18 European study groups and 23 national paediatric haematology/oncology societies. SIOPE is the European branch of the International Society of Paediatric Oncology and one of the six founding members of the European Cancer Organisation. SIOPE is preparing its strategic agenda to assure long-term sustainability of clinical and translational research in paediatric malignancies over the next 15 years. SIOPE tackles the issues of equal access to standard care and research across Europe and improvement of long term follow up. SIOPE defined a comprehensive syllabus for training European specialists. A strong partnership with parent, patient and survivor organisations is being developed to successfully achieve the goals of this patient-centred agenda. SIOPE is advocating in the field of EU policies, such as the Clinical Trials Regulation and the Paediatric Medicine Regulation, to warrant that the voice of young people is heard and their needs adequately addressed. SIOPE and the European community are entirely committed to the global agenda against childhood cancers to overcome the challenges to increasing both cure and quality of cure of young people with cancer.

New policies to address the global burden of childhood cancers.

Childhood cancer is a major global health issue. Every year, almost 100 000 children die from cancer before the age of 15 years, more than 90% of them in resource-limited countries. Here, we review the key policy issues for the delivery of better care, research, and education of professionals and patients. We present a key list of time-limited proposals focusing on change to health systems and research and development. These include sector and system reforms to make care affordable to all, policies to promote growth of civil society around both cancer and Millennium Development Goals, major improvements to public health services (particularly the introduction of national cancer plans), improved career development, and increased remuneration of specialist health-care workers and government support for childhood cancer registries. Research and development proposals focus on sustainable funding, the establishment of more research networks, and clinical research specifically targeted at the needs of low-income and middle-income countries. Finally, we present proposals to address the need for clinical trial innovation, the complex dichotomy of regulations, and the threats to the availability of data for childhood cancers.

The Effect of Processing and Seasonality on the Iodine and Selenium Concentration of Cow's Milk Produced in Northern Ireland (NI): Implications for Population Dietary Intake.

Cow's milk is the most important dietary source of iodine in the UK and Ireland, and also contributes to dietary selenium intakes. The aim of this study was to investigate the effect of season, milk fat class (whole; semi-skimmed; skimmed) and pasteurisation on iodine and selenium concentrations in Northern Ireland (NI) milk, and to estimate the contribution of this milk to consumer iodine and selenium intakes. Milk samples (unpasteurised, whole, semi-skimmed and skimmed) were collected weekly from two large NI creameries between May 2013 and April 2014 and were analysed by inductively coupled plasma-mass spectrometry (ICP-MS). Using milk consumption data from the National Diet and Nutrition Survey (NDNS) Rolling Programme, the contribution of milk (at iodine and selenium concentrations measured in the present study) to UK dietary intakes was estimated. The mean ± standard deviation (SD) iodine concentration of milk was 475.9 ± 63.5 µg/kg and the mean selenium concentration of milk was 17.8 ± 2.7 µg/kg. Season had an important determining effect on the iodine, but not the selenium, content of cow's milk, where iodine concentrations were highest in milk produced in spring compared to autumn months (534.3 ± 53.7 vs. 433.6 ± 57.8 µg/kg, respectively; p = 0.001). The measured iodine and selenium concentrations of NI milk were higher than those listed in current UK Food Composition Databases (Food Standards Agency (FSA) (2002); FSA (2015)). The dietary modelling analysis confirmed that milk makes an important contribution to iodine and selenium intakes. This contribution may be higher than previously estimated if iodine and selenium (+25.0 and +1.1 µg/day respectively) concentrations measured in the present study were replicable across the UK at the current level of milk consumption. Iodine intakes were theoretically shown to vary by season concurrent with the seasonal variation in NI milk iodine concentrations. Routine monitoring of milk iodine concentrations is required and efforts should be made to understand reasons for fluctuations in milk iodine concentrations, in order to realise the nutritional impact to consumers.

European Survey on Standards of Care in paediatric oncology centres.

BACKGROUND: In recent years, the European Commission has supported an increased focus on rare cancers in order to improve quality of care, disseminate best practice and set up networks to improve access that is essential to continued progress. At European Union (EU) conference in 2009, an agreement was reached to create a 'European Standard of Care for Children with Cancer'. In 2013, the European Paediatric Oncology Society launched a Europe-wide survey in order to assess the implementation of the Standards. METHODS: Representative experts from 36 countries, including 27 EU members, were invited to complete a questionnaire describing the quality of treatment and care received by young cancer patients in their country, together with the characteristics of the health care infrastructure and paediatric haematology-oncology (PHO) teams. FINDINGS: Thirty-five European countries provided comprehensive responses. Within the responding countries, 341 PHO centres were identified. Only 18 countries consider they have full diagnostic services, all necessary drugs and supportive care. The annual incidence rate is approximately 146.1 new cancer cases/million children and adolescents. In 24 countries, paediatric haematology and oncology is officially recognised as a specific qualification. A total of 1178 specialists certified in PHO are currently working in Europe. Finally, 31 (88.6%) countries provide a multidisciplinary palliative care for terminally ill children. INTERPRETATION: This survey provides quantitative data that demonstrate the current healthcare inequalities for children and adolescents with cancer in Europe. This variability in care provision and quality is likely to underlie the variation in childhood cancer survival rate in these countries.

Towards reducing inequalities: European Standards of Care for Children with Cancer.

Despite the increase of cure rates in the treatment of children with cancer there is a significant discrepancy in the outcome within Europe. Data are showing us that there is a difference of 20% in outcomes for young people with cancer when comparing North and Western Europe with Central and Eastern Europe. One of the most important necessities, in order to be able to have comparable results and equitable outcomes about inequalities, is to have the Principle Treatment Centres, meeting a minimum level of standards and being accessible to continuously updated 'best practice'. The European Society of Paediatric Oncology (SIOPE) has initiated a study in order to monitor the current situation of the European Standards of Paediatric Oncology Centres. The results of the study showed disparities of Standards of Care in the Treatment Centres across Europe. Therefore SIOPE initiated a project aimed at improving the Quality-of-Care of children and adolescents with cancer and to assess the relevant organisational aspects within paediatric oncology. At the first European Union (EU) Conference in Warsaw 2009, an agreement was obtained from all involved stakeholders to initiate the creation of Pan-European guidelines entitled 'European Standards of Care for Children with Cancer'. The guidelines outlined in this document represent the minimum standards of care that should be implemented at the EU level. Describing the different aspects of Care over 15 chapters and available in more than 16 different EU languages these guidelines are used as tools for both professionals and parent/patients groups in order to advocate 'improved standards across EU'.