PhD defence C.P. (Carla) Vlooswijk

Below is a brief summary of the dissertation: 

Adolescent and Young Adult (AYA) cancer survivors, defined as those diagnosed with cancer for the first time between the ages of 18 and 39, are recognized as a distinct group within oncology with unique needs. AYA cancer survivors face the challenges of coping with cancer and its treatment while also undergoing physical and psychosocial developmental changes. More than 80% of AYA cancer survivors are now living five years beyond their diagnosis and have the prospect of a long remaining life. As a result, there is an increasing need for patient-reported outcome (PRO) research to examine their age-specific supportive care needs. However, the participation of AYA cancer survivors in research in general is limited. A better understanding of their age-specific supportive care needs will make it possible to personalize provision of (online) information and support, and improve AYA care [1]. Individualized information and support can help AYA cancer survivors to cope with the consequences of their disease and support them to engage in healthy lifestyle behaviors. This is of utmost importance because AYA cancer survivors are at risk of developing long-term (e.g. fatigue, cognitive problems, distress) and late effects (e.g. cardiovascular disease, second malignancy). Digital technologies can be helpful in providing personalized information, age-appropriate health interventions and peer support.

This dissertation identified a lack of data on PROs for certain AYA cancer subgroups. To improve the representativeness of our PRO data, more emphasis must be placed on reaching out to these underrepresented cancer survivors, such as male cancer survivors, cancer survivors with migrant backgrounds, and AYA cancer survivors with a lower SES. Over the course of this PhD project, we have shown that long-term survivors experience age-specific issues that need to be addressed through AYA-specific care. By investigating PROs, we can inform the development of digital AYA care and enhance shared decision making in clinical settings.  Improving AYA care through the use of age-appropriate digital health interventions can help AYAs cope with the consequences of their cancer diagnosis, improve their psychological health, and promote healthy lifestyle behaviors. An age-specific COS should be implemented in PRO research to inform AYA cancer survivors about their own health and monitor and evaluate the care provided to them. This would lead to improvements in care and, ultimately, the quality of life of future AYA cancer survivors.