Riccardo Haupt, Survivorship Passport (SurPass) Coordinator from the Gaslini Institute of Genoa, commented on the latest developments in this important initiative on the occasion of the 7th ExPO-r-Net Biannual ExeCom Meeting in Padua, Italy.
The SurPass will provide childhood cancer survivors and clinicians with an easy access to clinical data and personalised recommendations, to ensure that side effects can be quickly and accurately diagnosed and treated. Its prototype has been finalised by tapping into the existing European resources, infrastructures and study groups. SIOPE and some ExPO-r-Net partners actively contributed to its development by cross-checking the accuracy and user-friendliness of the information available on the online platform, and by helping in the design of the SurPass recommendation brochures.
The SurPass initiative has also been included in the EU Joint Action on Rare Cancers (JARC), which will tackle the existing lack of networking between countries and clinics across Europe and inequalities of access to follow-up care. Within the JARC initiative, the SurPass guidelines on models of healthcare for survivors of childhood cancers developed by PanCare partners will be further consolidated.
Most importantly, the SurPass prototype is starting to be tested and integrated in EU Member States’ National Cancer Plans. SIOPE and ExPO-r-Net partners are currently liaising with Health Ministries to ensure that this model will be effectively adopted and introduced into national healthcare systems in Europe. So far, it has been included in 2015 in the 5-years’ Austrian cancer plan (and the first SurPass recommendation brochures on cardiomyopathy and breast cancer were presented to the Austrian Ministry of Health) and in September 2016 ‘Childhood Cancer Switzerland’ – an organisation regrouping healthcare specialists, families, and survivors of childhood cancer – agreed to start introducing of the “Survivorship Passport” in all Swiss paediatric hospitals. Belgian authorities also showed a sheer interest in this initiative.
A peculiar aspect of the SurPass initiative within all the mentioned projects and the PanCare group has been the effective exchange of information and collaboration with parent and survivor organisations, which allowed to better understand their needs and increase general awareness about survivorship issues. The SurPass was also included in one of the seven objectives of the SIOPE Strategic Plan, a reference document which received a considerable endorsement from representatives of the European paediatric oncology community.
The SurPass represents a potentially effective model to improve the quality of life of former childhood cancer patients by better monitoring their health, supporting them in their ‘transition’ into adult healthcare, and empowering them to be responsible for their own well-being. If it will gather a wide enough commitment from European and national policy-makers, this innovative solution might increase the capacity to fully respond to the needs of European survivors and result in a more appropriate and cost-effective use of healthcare systems’ resources.