Paediatric Cancer: Persisting Public Health issue

Despite important advances over the last decades, paediatric cancer is still the leading cause of death by disease in children in Europe.

Approximately 35,000 children – from new-borns to teenagers – are affected, and 6,000 lose their battle each year.

An estimated 10% to 20% of these cancer-related deaths occurs due to lack of access to quality specialist care that children with cancer require.

Indeed, the quality and availability of paediatric cancer care varies widely across Europe. Survival is generally lower in Central and Eastern European Countries – a disparity that becomes even larger for cancers with historically poor outcomes.

• The ExPO-r-Net project was dedicated to addressing this major public health challenge by establishing a European Reference Network linking expert referral sites and advisory tumour boards in the field of paediatric oncology.
• ExPO-r-Net not only enabled treatment of children and young people with cancer in a Member State other than the Member State of affiliation but also explored opportunities where eHealth allows provision of expertise at a distance while the patient remains in a familiar environment.
• In addition, the project strove to improve the treatment and care provided all over Europe by fostering the adoption of the European Standards of Care for Children with Cancer – identified as a quality reference point by the multi-stakeholder specialists.

Survivorship: Rising social challenge

As research progress has enabled a majority of childhood cancer cases to be cured, there is an increasing number of survivors who reach adulthood. However, up to 40% of survivors face long-term sequellae. Thus, survivorship – although a great achievement in itself – poses an increasing social challenge as more children who have had cancer integrate work life and create families of their own co-existing with post-treatment effects.

• ExPO-r-Net addressed this issue by developing the Survivorship Passport tool to aid and steer continued care.

EU patients’ rights in cross-border healthcare

By pursuing its mission, ExPO-r-Net served as a proof of concept on implementing the European Union Directive 2011/24/EU on patients’ rights in cross-border healthcare, set to enable patients to receive healthcare in another Member State and claim reimbursement for it at home.

European Reference Networks for complex and rare conditions, set to become operational in 2016/2017, are a key feature of this legislation.

• ExPO-r-Net activities can provide valuable insights on how the European Reference Networks operate before they are officially set up.