PhD defence C. (Cas) Drabbe

Below is a brief summary about the dissertation:

Sarcomas are a group of rare malignant tumours, originating from mesenchymal cells. These tumours are extremely heterogeneous and occur at all ages. Two entities that also arise from mesenchymal cells - but are often addressed separately - are gastrointestinal stromal tumours (GIST) and desmoid fibromatosis (DF). The first part of this thesis focusses on embryonal and alveolar rhabdomyosarcomas (RMS), GIST and DF, diagnosed at adolescent and young adult (AYA) age. The results show that RMS, GIST and DF have specific sociodemographic, tumour and treatment characteristics as well as distinct survival outcomes in specific age groups. This shows the need for treatment protocols that incorporate age-specific characteristics of sarcoma and desmoid. The second part of this thesis presents studies on sarcoma patients in general and uses the results of the sarcoma survivorship (SURVSARC) study to investigate the impact of age on Health-Related Quality of Life (HRQoL), social functioning and the patient experience with healthcare. The last chapter describes the results of a project where we set the research agenda for sarcomas together with patients and carers. For soft-tissue sarcoma and bone sarcoma patients in general, the impact of age on the patient’s perspective was demonstrated in terms of HRQoL and the patient’s experience with the healthcare system. This emphasizes the need for personalized follow-up care that is also based on the age-specific needs of the patient and not only on the risk of disease recurrence.