A Paediatric Oncology Reference Network in Europe
Though survival rates in childhood cancer have vastly improved, inequalities still remain in treatment and care available to different member states. Professor Ruth Ladenstein, St. Anna’s Children’s Hospital, Vienna, Austria, reviews the survival gap and details how ExPO-r-Net addresses this need, in line with the SIOPE Strategic Plan’s objective to bring about equal access to standard care
Thanks to the progress made in Europe by research over the past fifty years, survival rates for childhood cancers in Europe have greatly improved and today amount to approximately 80%. However, this is not valid in all European countries: in Eastern-European countries with low health expenditure rates (LHEAR countries) survival is on average 10 to 20% lower than in the rest of the region.
Some centres in Europe have been promoting excellence and dispose of the latest diagnostic and treatment technologies, and others do not even dispose of the basic requirements to ensure standard treatments, care, and follow-up to all patients. Delayed diagnosis and treatment, lack of specialised centres with multidisciplinary teams, and limited drug supply might explain these inequalities.
Collaborative programmes to ensure a Europe-wide cross-border healthcare can reduce the current inequalities in childhood cancer healthcare capabilities in different EU member states and thus narrow the survival gaps. ExPO-r-Net addresses this need, in line with the SIOPE Strategic Plan’s objective to bring about equal access to standard care (in both diagnosis and treatment), expertise and clinical research across Europe. To do so, this 3.5-years’ EU project is building a European Reference Network (ERN) for Paediatric Oncology.
A ERN is a network connecting highly specialised healthcare providers to improve access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise in Europe. The aim of ExPO-r-Net is thus to enable children and young people with cancer to receive high-quality treatment in a Member State other than the Member State of affiliation, because of a lack of expertise or specialised resources in a certain type of malignancy. ExPO-r-Net partners are therefore working to provide a clear roadmap to approved expert referral sites and virtual tumour advisory boards for healthcare providers, incorporating expertise from all over Europe and integrating all existing information to allow advice on diagnostics and treatments for patients in need. The disease-specific clinical trial groups in Europe which were identified in a bottom-up process have acted as “hubs of coordination” for special childhood cancer interventions and treatments. The project fosters virtual tumour boards that facilitate the free movement of information and knowledge. It also addresses related open reimbursement questions for virtual tumour boards when acting across the EU.
On 16 March 2016 the European Commission’s Directorate for Health and Food Safety (DG SANTE) published a call to establish ERNs. This first call for ERNs published by the European Commission – in line with the EU Directive on Cross-Border Healthcare and implementing decision of 2014 – recognised paediatric oncology as a stand-alone European Reference Network (ERN) in the rare cancers field.
The SIOPE community responded and committed to engage in this call and to submit an application for a paediatric cancer ERN (PaedCan ERN). The “pilot project” ExPO-r-Net increased this PaedCan ERN’s potential to become a strong network, having already prepared a clear structure for healthcare providers/patients to provide cross-border healthcare along with twinning structures for identified centres in lower income European countries. In the best interest of patients, a triage function is proposed in the decision-making process for cross-border healthcare (CBHC) through virtual tumour board advice. The PaedCan ERN strongly engages with national and clinical trial group structures. The virtual tumour board advisory function is a main theme, but will absorb considerable amounts of local expert resources at the engaging expert sites. A European compensation system similar to the already existing S2 agreements for CBHC will be needed to guarantee the sustainability of this function.
As a logical extension of the ExPO-r-Net, funded by DG SANTE, Project Coordinator and SIOPE Board Member Professor Ruth Ladenstein and her institution CCRI took the lead in preparing the ERN application, coordinating the preparation of a list of reference centres to be included as a start in PaedCan ERN. This was possible with the support of the National Societies of Paediatric Haemato-Oncology (NaPHOS), the European Clinical Trial Groups (ECTGs) and the ExPO-r-Net partners.
The PaedCan ERN will have a broader scope than envisaged at the start of ExPO-r-Net, not only concentrating on a few very rare paediatric cancer indications. It will include all types of childhood cancers but will keep the focus on special conditions requiring CBHC interventions. After two independent evaluations – one at the European level (the network defines itself and presents the partner centres chosen through a bottom up process) and one at the national level (European member states must agree with those choices) – the accepted networks are expected to kick-off at an official conference in February 2017.
In summary, the creation of these patient-centred and clinically-led networks of healthcare providers aim to improve the quality, safety and access to quality expert healthcare across Europe for complex paediatric malignancies. The innovative character of the proposed PaedCan ERN is the strengthening of multidisciplinarity, its capacity to overcome fragmentation in its capacity to cover the needs for CBHC advise and care. This is a major added value to improve outcomes in young people with cancer.