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Ismay de Beijer

Ismay de Beijer
Ismay de Beijer

Implementation of the digital European PanCare SurvivorShip Passport to improve long-term care for survivors of childhood and adolescent cancer

The digital European Pancare SurvivorShip Passport (PanCareSurPass) aims to optimize long-term follow-up care and thereby improve or maintain the quality of life of childhood cancer survivors. My PhD project specifically focuses on identifying barriers and facilitators related to the implementation of the PanCareSurPass v2.0. These barriers and facilitators are not only related to care, but also to economic, ethical, legal, social, and technological aspects. To ensure that all stakeholders are heard and to further elaborate on the contextual factors, we have organized Open Space meetings in several European countries. In these meetings, the participants (e.g. survivors, IT specialists, and healthcare professionals) were encouraged to manage and create the agenda themselves and to take responsibility for leading the sessions.

In addition to the implementation of the PanCareSurPass, we focused on developing a guideline for survivorship care from the end of cancer treatment until five years after diagnosis. This guideline is important because some late effects – such as craniofacial growth problems, osteonecrosis or iron overload – manifest themselves already at the end of the treatment or within five years after the initial diagnosis. Besides, I am working with the International Guidelines Harmonization Group (IGHG) on a guideline for health promotion and lifestyle. This guideline covers several topics, namely nutrition, physical activity, sleep, stress, alcohol, smoking, drug use, and sun exposure.

Lastly, I try to map the burden of disease of late effects using LATER 1 and LATER 2 data. If we know better which late effects manifest themselves and which groups run a higher risk of developing late effects, we can hopefully adjust the prevention methods accordingly.

Supervisors: Prof. dr. Leontien Kremer, dr. Saskia Pluijm, dr. Heleen van der Pal, dr. Lieke Feijen, dr. Renée Mulder