Health-related quality of life of long-term adolescent and young adult (AYA) cancer survivors compared to a matched normative population: results of the SURVAYA study

Purpose: Health-related quality of life (HRQoL) is a commonly assessed patient-reported outcome that might be especially relevant for the adolescent and young adult (AYA) cancer survivor population. However, limited data is available regarding the HRQoL of long-term AYA cancer survivors compared to a matched normative population and associated factors. 

Methods: AYA cancer survivors (18–39 years at initial diagnosis; 5–20 years post-diagnosis), identified by the Netherlands Cancer Registry (NCR), were invited for participation in the SURVAYA questionnaire study. Participants self-reported their socio-demographics, health-related conditions, healthcare use, positive life outlook, and HRQoL (EORTC QLQ-C30). An age- and sex-matched normative population was randomly composed. Clinical data were retrieved from the NCR. 

Results: A total of 3745 AYAs (on average 32 years old at diagnosis, 12 years post-diagnosis) and 517 peers without cancer (normative population) were included. All functioning scales showed significant differences, with AYA cancer survivors scoring lower: cognitive (77.9 vs. 92.2), role (83.2 vs. 91.3), social (87.9 vs. 93.6), physical (91.5 vs. 94.3), and emotional functioning (79.5 vs. 83.4). No significant difference was observed in global QoL. Female sex, lower educational attainment, older age at diagnosis, several tumor types, radiotherapy, chemotherapy, higher stage, more health-related conditions, and more healthcare visits were negatively associated with several HRQoL scales. 

Conclusions: AYA cancer survivors face worse HRQoL compared to peers in all functioning domains, but it is most pronounced in cognitive functioning. This study underlines the need for timely cancer survivorship care to regain, improve, and ensure the quality of life of current and future AYA cancer survivors. Clinical trial registration.: NCT05379387.