COMPRAYA: Dutch nationwide infrastructure for COMPRehensive health outcome and intervention research among patients with adolescent and young adult cancer

Abstract

Background: Compared to children, Adolescent and Young Adult (AYA) cancer patients, diagnosed with cancer between 18-39 years old, more often suffer from delay in diagnosis and lack of centralization of care, age-specific expertise and structured follow-up. This group presents with a unique spectrum of cancers with distinctive tumor biology, cancer risk factors, and psychosocial developmental challenges. The potential burden of medical and psychosocial problems could result in compromised quality of life and reduced life expectancy. Given the differences, findings derived from childhood cancer patients cannot be extrapolated to AYA cancer patients. It is imperative for advances in the field of AYA oncology to pool data sources (patient-reported outcomes, clinical, genetic and biological data) across institutions and create large cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population. Therefore, we will create a unique nationwide infrastructure (COMPRAYA) for research into the prevalence, predictive and prognostic markers and underlying mechanisms of early and late medical and psychosocial outcomes, and to facilitate the development and testing of (early) intervention strategies to improve these outcomes for patients (at risk). Trial design: An observational cohort of 1-year AYA cancer survivors (N = 4000), recruited over 4 years, followed prospectively, will be established. Patients are asked to (1) complete validated patient-reported outcome measures; (2) donate a blood, hair, urine and stool sample; (3) consent for biobanking of tumor tissue and serial clinical data extraction from medical records and Netherlands Cancer Registry; (4) visit an outpatient clinic (vital and phenotypic parameters); (5) be approached for ancillary studies. The established Dutch AYA cancer care network forms an optimal collaborating environment. Next to the COMPRAYA research infrastructure, an online AYA platform will be created together with and for AYA cancer patients where age-specific information, support and interventions will become available. Legal entity responsible for the study: Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital. Funding: KWF Kanker Bestrijding. Disclosure: All authors have declared no conflicts of interest.