Optimization of treatment, care and patient-centeredness in GIST and soft tissue sarcoma patients

This thesis aimed to shed light on the care pathways of patients with gastrointestinal stromal tumors (GIST)
in the Netherlands and explored patient-centered approaches for individuals diagnosed with GIST and soft
tissue sarcomas (STS), which served as a common thread throughout this thesis. This thesis integrated
insights from clinical, registry-based, and patient-reported data, underscoring the challenges inherent in
managing these rare cancer types. We demonstrated that most high-risk and metastatic GIST patients are
referred to reference centers. The rare subset of patients with SDH-deficient GIST requires a different
approach compared to patients with KIT-PDGFRA mutated GIST. A collaborative project with the Sarcoma
Patient Advocacy Global Network (SPAGN) identified priorities for research and patient advocacy from the
patients’ perspective, revealing variations across subgroups of patients. This thesis also highlighted the
financial toxicity often experienced by STS patients. Finally, it emphasized the importance of Patient
Reported Outcomes (PROs) in guiding the decision-making process for initiating palliative chemotherapy
in STS patients.