? Project 3, Late Effects in the AYA Cancer Population Few studies have evaluated long-term medical outcomes in US survivors of adolescent and young (AYA) cancers, a population with among the greatest number of life-years affected by cancer. Studies on AYA survivors find elevated risks of medical conditions such as asthma, diabetes, and second cancers, but typically do not consider treatment in detail or examine results by clinical or patient factors to identify those at higher risk for late effects and poorer survival. This limited research hinders creating long-term care guidelines and interventions to improve health outcomes in this population. To address these evidence gaps, we propose a detailed examination of clinical care factors and their association with late effects in AYA cancer survivors using integrated P01 data resources: the clinical and research infrastructure of Kaiser Permanente (KP); the population-based California Cancer Registry (CCR) and Utah Cancer Registry (UCR), both linked to statewide healthcare data; and survey data from ~5,000 AYAs with cancer, including from North Carolina. The KP Northern California (KPNC) and Southern California (KPSC) integrated healthcare systems provide comprehensive healthcare services and use electronic health records that facilitate investigating late effects of cancer and its treatment. The CCR-hospitalization are from linking one of the largest, most diverse U.S. cancer registries with statewide hospitalization, emergency department, and ambulatory surgery data. The UCR-hospitalization are from similar sources for many rural and medically underserved residents. With these diverse resources, this study will assess chronic medical conditions and late effects (collectively called late effects) in AYA cancer survivors and will: 1) determine the incidence of late effects, examining how risks vary by primary cancer type, specific treatment approaches, race/ethnicity, neighborhood socioeconomic status, and health insurance coverage; 2) examine how guideline-concordant survivorship care and inpatient and outpatient visits to multiple provider types are associated with the risk of late effects; and 3) evaluate the influence of patient-reported barriers to care on late effects. We will use a cohort of ~53,000 AYAs diagnosed with cancer from 2006 through 2019 in California; ~13,000 will have been diagnosed and treated at KPNC or KPSC. Data from KPNC, KPSC and California hospitals allows medical outcome follow-up of AYA cancer survivors who leave or seek coverage outside the KP system and facilitates comparisons between those seeking care within and outside an integrated care system for late effects requiring hospitalization. Our analyses will be enhanced by approximately 8,400 AYAs from Utah, of whom ~1,700 are rural residents. We hypothesize a higher burden of late effects among AYAs with care barriers such as insurance and financial concerns that impact both initial and survivorship care. Results from this project will inform evidence-based guidelines on prevention and surveillance of late effects among AYAs with cancer by characterizing disparities and unique barriers to receipt of necessary care and lead to strategies to mitigate the impact of late effects.

Public Health Relevance

? Project 3, Late Effects in the AYA Cancer Population This project will study the late effects of cancer treatment, including cardiovascular and endocrine diseases, in adolescent and young adult (AYA) cancer survivors. We will identify demographic, clinical, and healthcare factors that influence risk of late effects and determine how disparities in health insurance, finances, care coordination and other factors impact late effects in AYA survivors. Findings from this study will help researchers and healthcare providers improve monitoring of cancer survivors and detect late effects earlier.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Research Program Projects (P01)
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Special Emphasis Panel (ZCA1)
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Kaiser Foundation Research Institute
United States
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