The Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) is a group of European healthcare professionals – paediatric haematologists and oncologists, nurses, experts in epidemiology, cancer registration and psychology – survivors and their families who decided to join their forces in 2008 to ensure that every European survivor of childhood and adolescent cancer receives optimal long-term care. Its philosophy is rooted in the “Erice statement” drafted at a meeting in 2006, when PanCare members decided to focus their work on: performing research and providing evidence-based information on long-term risks emanating from treatment of the primary malignancy; identifying and promoting international best practices of long-term care, transition programmes and models of care; developing and applying evidence-based guidelines for the long-term follow-up of survivors; and providing education and dissemination of this information to survivors and clinicians.
Last 3-5 May 2017, the PanCare consortium met for its regular meeting in Lund, Sweden. At this meeting, partners shared updates related to the parallel initiatives tackling survivorship issues, such as the SIOPE Strategic Plan, ExPO-r-Net and the ERN PaedCan, as well as the JARC. After a presentation of scientific posters, the Coordinator of this initiative and SIOPE Board member Professor Lars Hjorth (Lund University, Sweden) chaired the PanCare General Assembly and discussed activity reports and plans for the upcoming years and internal organisational matters, such as the recent elections for membersof the PanCare Board.
On this occasion, some information was shared also about the important Survivorship Passport (SurPass) initiative. 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. While it has been conceived, launched and co-sponsored within a few EU-projects (ENCCA, PanCareSurFup and ExPO-r-Net), now both PanCare and SIOPE are ensuring its long-term sustainability by actively contributing to its development. More recently, it has also been integrated in the EU Joint Action on Rare Cancers (JARC), an initiative which tackles the existing lack of networking between countries and clinics across Europe and inequalities of access to follow-up care.
The SurPass prototype has been finalised thanks to the contribution of the existing European study groups, infrastructures and projects. PanCare, SIOPE and some ExPO-r-Net partners are currently cross-checking the accuracy and user-friendliness of the information available on the online platform and helping in the design of its recommendation brochures. Within the JARC initiative, the SurPass guidelines on models of healthcare for survivors of childhood cancers will be further consolidated. Included in one of the seven objectives of the SIOPE Strategic Plan, the SurPass also greatly benefitted from 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.
Importantly, the SurPass prototype is starting to be tested and integrated in EU Member States’ National Cancer Plans. Partners in this initiative have been 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 in September 2016 ‘Childhood Cancer Switzerland’ agreed to start introducing of the “Survivorship Passport” in all Swiss paediatric hospitals. Belgian authorities also showed a sheer interest in the SurPass.
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. It can potentially 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.
More information:
Last 3-5 May 2017, the PanCare consortium met for its regular meeting in Lund, Sweden. At this meeting, partners shared updates related to the parallel initiatives tackling survivorship issues, such as the SIOPE Strategic Plan, ExPO-r-Net and the ERN PaedCan, as well as the JARC. After a presentation of scientific posters, the Coordinator of this initiative and SIOPE Board member Professor Lars Hjorth (Lund University, Sweden) chaired the PanCare General Assembly and discussed activity reports and plans for the upcoming years and internal organisational matters, such as the recent elections for membersof the PanCare Board.
On this occasion, some information was shared also about the important Survivorship Passport (SurPass) initiative. 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. While it has been conceived, launched and co-sponsored within a few EU-projects (ENCCA, PanCareSurFup and ExPO-r-Net), now both PanCare and SIOPE are ensuring its long-term sustainability by actively contributing to its development. More recently, it has also been integrated in the EU Joint Action on Rare Cancers (JARC), an initiative which tackles the existing lack of networking between countries and clinics across Europe and inequalities of access to follow-up care.
The SurPass prototype has been finalised thanks to the contribution of the existing European study groups, infrastructures and projects. PanCare, SIOPE and some ExPO-r-Net partners are currently cross-checking the accuracy and user-friendliness of the information available on the online platform and helping in the design of its recommendation brochures. Within the JARC initiative, the SurPass guidelines on models of healthcare for survivors of childhood cancers will be further consolidated. Included in one of the seven objectives of the SIOPE Strategic Plan, the SurPass also greatly benefitted from 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.
Importantly, the SurPass prototype is starting to be tested and integrated in EU Member States’ National Cancer Plans. Partners in this initiative have been 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 in September 2016 ‘Childhood Cancer Switzerland’ agreed to start introducing of the “Survivorship Passport” in all Swiss paediatric hospitals. Belgian authorities also showed a sheer interest in the SurPass.
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. It can potentially 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.
More information: