PanCare studies of the scale-up and implementation of the digital Survivorship Passport to improve people-centred care for childhood cancer survivors

Almost 500,000 former childhood cancer patients (CCS) are now living in Europe.

Compared to the general population, CCS represent a vulnerable population as they are at an increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality.

Many survivors are unaware of their personal risk for specific late effects, which reduces their ability to manage their own follow-up care.

Similarly, their treating healthcare professionals (HCPs) lack information about care required for CCS and access to treatment data from their childhood cancer.

The Survivorship Passport (SurPass) is an innovative, digital tool, developed in previous EU-funded projects, that can be used to overcome these knowledge gaps to improve people-centred long-term survivorship care.

Importantly, end users (CCS, HCPs) are integral to the research, represented by three key stakeholder networks (PanCare, SIOP Europe, CCI Europe).PanCareSurPass will conduct a robust assessment of the implementation of the SurPass by first conducting a pre-implementation study in six countries (Austria, Belgium, Germany, Italy, Lithuania, Spain) representing three infrastructural scenarios in Europe.

Ethical, structural, organisational, economical, national, local, privacy issues, health systems, and particular national circumstances will be taken into account throughout.

An Implementation Strategy will be developed and the SurPass will be updated and validated before use in an implementation study in the six countries.

The study will look at a range of outcomes including CCS activation and empowerment, CCS/HCP satisfaction with the tool, feasibility and health economics.

Based on the results of the study, a Prediction Model will be developed to promote and support future implementation of the SurPass across Europe.