About our pillar:
There is a huge disparity in survival rates (20% less in Southern and Eastern Europe when compared to Northern and Western Europe) and significant long-term side-effects in many survivors across Europe. Most of these imbalances are due to the different treatment approaches, the organisation of care and availability of resources.
The aim of this pillar is to establish the same standards of care across Europe by providing all children and adolescents with cancer with the same access to diagnosis and treatment regimens, adequate monitoring of late effects, adequate facilities during treatment, continuous education of healthcare staff, access to psychosocial care and continuous involvement of parents in the treatment process.
To reach the goal, Diagnosis, Treatment & Care Pillar is set through 5 subpillars:
European Standards of Care
The goal of this subpillar is to ensure equal access to standard care, expertise and clinical research across Europe, and foster the instrumental role of the European Reference Network for Paediatric Cancers (ERN PaedCan) addressing pronounced inequalities.
What we achieved so far:
– Release of the first WHO Report on Childhood Cancer Inequalities across Europe to which CCI Europe contributed.
– 1st revision of the European Standards of Care for Children with Cancer in partnership with SIOP Europe.
– Release of 1st European Standards of Clinical Practice (ESCP) protocols with recommendations on best standard treatments to be used all across Europe.
European Standard Clinical Practice (ESCP)
The ESCP Project is defining treatment pathways that reflect the current best standard of care. Having a documented benchmark, especially where national recommendations are not available, is a huge step for patients and parents across Europe.
Appropriate reimbursement should be foreseen for accessing cross-border care. CCI Europe together with healthcare professionals (incl. the ERN PaedCan) work on reducing inequalities in childhood cancer across Europe.
– Evaluation of the EU Cross Border Healthcare Directive.
Our goal is to ensure that safe, effective, sustainable, and affordable quality anticancer medicines defined as essential are accessible for all children and adolescents with cancer across Europe, at all times.
– results of the SIOPE Essential Medicines Project where CCI Europe was involved will soon be available
– 16 new paediatric cancer medicines and indications were included under the updated WHO Essential Medicines List for Children (2021) as a result of the progress achieved in the SIOPE Essential Medicines Project.
Palliative Care and Pain Management
We aim to support further access to supportive care medicines and palliative care for paediatric malignancies across Europe.
– SIOPE has formed a Paediatric Palliative Care Working Group where CCI-E is actively participating.
Adolescents and Young Adults (AYA)
Neither paediatric nor adult oncology has a distinct focus on AYA, which results in disparities for this patient group. Thus, our main goal is to ensure access to better diagnosis, treatment and care regimens for AYA patients.
We have built a strong team of parents, survivors and patient advocates, who are always eager to bring new ideas on the table and work together towards our common goal.