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. / Thesis / Doctor of Philosophy (PhD) / A person 15 to 39 years old with cancer will face many challenges. This is a time of life
with many changes such as continuing schooling, getting married, starting a career, or
starting a family. To make sure that young people with cancer are getting the best care,
and that they have the best chance to achieve their goals and contribute to society, we
need to measure what is important to this group. These measures can be used to compare
hospitals, or changes over time to help make care better. This paper looks at what we
already measure in this group, and what patients, researchers and healthcare workers
think also should be measured to help provide the best care for these patients. Measures
discussed in this paper could be used in programs to monitor the quality of care given to
young people with cancer.
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/27156 |
| Date | January 2021 |
| Creators | Rae, Charlene |
| Contributors | Costa, Andrew, Health Research Methodology |
| Source Sets | McMaster University |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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