As a result of improved childhood cancer treatments, more children and adolescents successfully survive cancer into adulthood. Almost 500,000 childhood cancer survivors (CCS) are now living in Europe, with about 8,000 new CCS each year. Compared to the general population, CCS represent a vulnerable population being at increased risk of developing health problems known as late effects, often resulting in lower quality of life. Many CCS are unaware of their personal risk for specific late effects, which reduces their ability to self-manage their own follow-up care and wellbeing. There is also a general lack of information among healthcare professionals (HCPs) about late effects, resulting in incorrect or delayed diagnoses and treatments. Information about cancer treatments given many years before may no longer be easily available, or available at all, to HCPs or CCS. Transition from paediatric to adult healthcare services is also a significant challenge for CCS, as is movement to a different region or country.
The Survivorship Passport (SurPass) is an innovative, digital tool that provides CCS and HCPs with the information needed for life-long survivorship care, better health promotion, improved late effects care and secondary cancer prevention. Importantly, the tool also reduces inequity by increasing access to information. For each CCS, the SurPass provides digital access to all relevant personal health data related to their cancer treatment (e.g. cancer diagnosis, treatment, etc.) in a Treatment Summary (TS) together with a personalised Survivorship Care Plan (SCP) based on international evidence-based clinical guidelines, as well as plain language information.
While the potential to improve people-centred survivorship care has been demonstrated for earlier versions of the SurPass, little is known about the costs and processes of scaling-up the digital tool and successfully implementing the tool in routine clinical care across Europe. PanCareSurPass worked to fill these knowledge gaps by looking broadly at implementation, while delivering and testing the next version of the SurPass (SurPass v2.0) in six European countries (Austria, Belgium, Germany, Italy, Lithuania, Spain).
