Understanding the Symptoms and Concerns of Adolescents and Young Adults with Cancer in Alberta: A Comparative Cohort Study Using Patient-Reported Outcomes.

Abstract

Purpose: Adolescents and young adults (AYAs) with cancer are in a unique situation due to their age and developmental stage in life and may have different symptoms and concerns than older patients. Patient-Reported Outcomes (PROs) questionnaires, routinely used in Alberta, can help identify the distinct needs of AYAs. We aimed to compare PROs data for AYAs and older adults (OAs) to better understand how the concerns of AYAs differ, which is key to providing individualized care and creating targeted programming and system-level change. Methods: Retrospective data were collected for two patient cohorts who completed at least one PROs questionnaire between October 1, 2019 and April 1, 2020. The AYA cohort was aged 18-39, and the OA cohort was aged 40 and older. Symptoms were compared using mean scores and multiple linear regression, and concerns were compared using counts and multivariate negative binomial regression. Results: AYAs had significantly higher mean scores on depression and anxiety, compared to OAs, and lower mean scores for most physical symptoms. They indicated significantly more concerns in the Emotional and Social/Family/Spiritual domains, and were over three times more likely to indicate Work/School as a concern. Conclusion: AYAs with cancer have distinct concerns that should be addressed to ensure comprehensive, quality cancer care for this population. PROs data are useful in identifying needs and facilitating evidence-based, data-driven change at all levels of the health care system.