Metrics for Evaluating System Level Change in Adolescent and Young Adult (AYA) Cancer Care in Canada

Abstract

Adolescents and young adults (AYAs, 15-39 years of age) with cancer face unique challenges. Efforts have been made to improve both care and outcomes for this population. Metrics to evaluate AYA cancer care efforts help to ensure that objectives and outcomes are being met. This thesis comprises 7 papers which explore system performance metrics for cancer care and control in AYAs. A scoping review introduces the topic and addresses the current state of indicator metrics for the AYA cancer population. The second paper extends this work and develops a consensus-based list of relevant indicators. The subsequent papers focus on further development of two of the identified indicators for implementation in Canada (identification of patient reported outcome measures (PROMS) for assessing distress; a referral indicator for oncofertility care). This thesis describes 14 indicators in 5 care areas. Two identified indicators were further developed to aid in implementation (“Proportion of AYA patients screened for distress with standardized AYA specific tools” and “Proportion of AYA patients who had fertility preservation discussion before treatment”). Criteria from the National Quality Forum (NQF) were used to assess commonly used PROMs for distress. It was found that although all PROMs had acceptable psychometric properties, only the “Impact of Cancer” scale of the CDS-AYA had strong content validity for AYA with cancer. For Oncofertility, the indicator “Proportion of cases attending a fertility consult visit ≤ 30 days from diagnosis of cancer” was recommended for use. Finally, factors associated with attending such a fertility consult were identified. Important factors for both men and women included: age at diagnosis, risk to fertility, year of diagnosis, treatment with radiation or chemotherapy, region of care, income and residential instability. The information presented in this thesis can be applied to national system performance initiatives to identify and implement metrics to monitor and evaluate cancer care in AYA.