Adolescents and young adults (AYAs) diagnosed with cancer between the ages of 18 and 39 face distinct medical and psychosocial challenges specific to this life stage. Despite these unique needs, AYAs are typically treated within the adult cancer care system, which is dispersed across the Netherlands and lacks dedicated AYA-specific care.
Biologically, AYAs develop a wide range of tumour types, including paediatric cancers, tumours common in older adults, and cancer types specific to this age group. However, it remains largely unclear what makes these patients biologically unique and whether treatments should be tailored specifically for them. Advances in treatment have led to longer survival, even with an uncertain or poor cancer prognosis, bringing additional challenges such as coping with an uncertain future and premature mortality. Moreover, a growing number of AYA cancer survivors experience severe late effects, further emphasizing the need for specialized support.
Psychosocially, these individuals are navigating significant life milestones that bring age-specific challenges, such as career interruptions, concerns about maintaining social connections, and the difficulties of raising young children. The impact of sociodemographic and treatment-related risk factors, as well as external (lifestyle) and internal factors (genetics, biology, physiology), on age-specific health outcomes is still largely unknown. Gaining a deeper understanding of which AYAs are at risk for poor health outcomes and the reasons behind this can help inform the development of evidence-based, age-specific programs and guidelines, aimed at prevention, optimal treatment, and supportive care.
To address these gaps, we collaborate closely with patients and the AYA healthcare network, integrating questions raised by patients or healthcare professionals (refer to ayazorgnetwerk.nl & kanker.nl/jong). Our research utilizes patient-reported outcome (PRO) measures (both qualitative and quantitative), biological data (e.g., blood, hair and feces samples), real-world data (RWD) from sources like the Netherlands Cancer Registry and Statistics Netherlands, and federated learning. By analyzing different phases of the diagnostic and treatment trajectory, we aim to improve healthcare and quality of life for AYAs.