Facing the unthinkable in the prime of life: Prevalence, risk factors and mechanisms of impaired medical and psychosocial health outcomes among adolescents and young adults with cancer

Samenvatting

After half a century of research focusing on improving health outcomes for children and older adults with cancer, attention has turned to adolescents and young adults (AYA), diagnosed with cancer between 18-39 years old, with a lack of progress in survival improvement. Findings derived from younger and older cancer survivors cannot be automatically extrapolated to AYAs. This group present with a unique spectrum of cancers and distinctive tumor biology. AYAs simultaneously face many physical, psychosocial and economic transitions characteristic for their developmental life stage, e.g. forming relationships, becoming financially independent, having children. With an 80% chance to survive, AYA cancer patients have a large proportion of their expected lifespan remaining. It is likely that there will be a burden of medical and psychosocial health problems, that could result in compromised health-related quality of life and reduced life expectancy. The lack of age-adjusted treatments and care makes adjustment to their disease and health-maintenance challenging.
Therefore, the aim of my project is to comprehensively assess the prevalence, risk factors and underlying mechanisms of impaired (age-specific) medical and psychosocial health outcomes in AYA cancer patients.
I will conduct two observational, population-based cohort studies:
Study 1: Retrospective - AYAs diagnosed between 1999-2014 (n=4500).
Study 2: Prospective - AYAs one-year post-diagnosis (n=2500) who will be followed over time.
Multidisciplinary data collection will take place using clinical data extraction; patient-reported outcome questionnaires (e.g. medical/psychosocial outcomes, lifestyle); biobanking of already collected tumor tissue; blood and hair samples.
Results will make it possible to identify patients at risk for poor outcomes and support them by providing information, education about risk factors and offering (age-specific) supportive care (direct care improvement). By asking participants to provide broad informed consent, both studies will form the basis of an innovative multiple randomized controlled trial, facilitating (inter)national collaboration and future intervention research.

Kenmerken

Projectnummer

VI.Vidi.198.007

Hoofdaanvrager

Dr. O. Husson

Verbonden aan

Nederlands Kanker Instituut, Antoni van Leeuwenhoek Ziekenhuis

Looptijd

01/09/2019 tot 30/09/2024