What are the care experiences of adolescents and young adults (AYAs) with cancer and do these experiences influence quality of life?

Abstract

Background: Adolescents and young adults (AYAs) with cancer are a unique yet poorly understood patient group. Neither children nor the common age for adult cancer, most AYAs are treated in hospitals with limited experience with this population. This study examines the association between AYAs' cancer care experiences and their quality of life (QoL). Methods: Cross-sectional survey of 200 AYAs (15-24 years at diagnosis), recruited through two Australian states' population-based cancer registries, examining experiences at diagnosis, treatment, and patients' physical, social, emotional and functional QoL. Results: On average, participants were 21-years-old (SD = 3.03) and 8.5 months (SD = 4.14) post-diagnosis. The majority had undergone surgery (70%) and/or chemotherapy (61%), with 31% having radiotherapy. Most patients were satisfied with their treatment (94%) and felt their treatment was age-appropriate (87%). However, 16% did not understand the information provided to them and only 54% indicated that health professionals (HPs) always checked this. AYAs who were always given information relevant to their age (34%) and who definitely received information about how to discuss their experience with family/friends (25%) displayed better social and emotional well-being than AYAs not always given this information (ps <0.01). AYAs reporting an HP provided emotional support throughout their care (47%) displayed better social well-being than those not consistently given this support (p < 0.01). Only 32% were offered the chance to meet other young cancer patients/survivors. Conclusions: This is one of the few large-scale studies to quantitatively assess AYA's care experiences. Results highlight the importance of age-appropriate services, information and support for enhancing this patient group's QoL.L6129312002016-11-02 <br />