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.

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.