PROFILES is a web-based registry which can be used to facilitate data collection on patient-reported outcomes from cancer survivors. It can be used simultaneously for multiple studies with different purposes. The main goals of PROFILES are to generate data relevant to:
- Psychosocial risk and outcome assessment to identify patients at high risk for poor health outcomes. Relevant questions include: Which factors are associated with ongoing health concerns of cancer survivors? Which patients are in need of (psychosocial) support? Do new systemic treatments, especially the new targeted ones, have a beneficial or adverse impact on patient-reported outcomes (e.g. HRQL, disease-specific complaints, anxiety, depression and fatigue)?
- To analyse mediating mechanisms to better understand the biological and behavioural factors associated with cancer treatment outcomes. For example, what is the impact of co-morbidity on PROs in cancer survivors?
- To evaluate physical and psychosocial care (needs) of cancer survivors. For example, does information disclosure relate to satisfaction with care, and health-care utilisation?