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Cancer survivors and survivorship care: Provider expectations, post-treatment health services, and patient reported outcomes

Abstract

The population of cancer survivors in the United States is currently estimated to be close to 14 million. Cancer survivors are at risk for a variety of physical and mental health deficits related to their disease and treatments. Most cancer survivors receive excellent care during their active cancer treatment (surgery, radiation, chemotherapy) but can feel lost and overwhelmed when entering the post-treatment phase of care. Research has shown that cancer survivors do not always receive optimal post-treatment care and preventative services.

This dissertation consists of three studies that explore issues in cancer survivorship care: 1) the use of guideline-recommended post-treatment health services in breast cancer survivors; 2) provider expectations and perceptions of breast cancer post-treatment care delivery; and 3) the prevalence of post-traumatic stress symptoms in cancer survivors and associated risk factors. This research used multiple data sources to explore these issues, including health insurance claims data, medical record abstraction, qualitative interview data, and patient-reported outcomes. Several methodologies were employed to analyze these data, including qualitative data analysis, multi-level modeling, elaboration models, multivariate linear and logistic regression models, and Kaplan-Meier estimates.

This research found that there are persistent gaps in survivorship care delivery. First, breast cancer survivors treated and followed at an academic medical center did not consistently receive guideline-recommended post-treatment care, and patients in this sample commonly received non-recommended care that has not been shown to provide benefit and could potentially be harmful. Second, oncology and primary care providers perceive many barriers to providing high-quality care in the post-treatment care period, most importantly lack of care coordination within oncology and across specialties. Finally, a sub-set of cancer survivors followed in a clinical survivorship program was found to have persistent post-traumatic stress symptoms.

These results demonstrate the importance of organized survivorship care delivery programs that would ensure high-quality patient care for this unique population. Findings suggest that post-treatment care delivery is a complex, multi-level process with many potential targets for improvement in quality of care. These studies demonstrate the pressing need for improving survivorship care coordination in order to deliver guideline concordant care. In addition, the persistent psychological effects of cancer and cancer treatment require continued research into effectively identifying and treating those at risk for ongoing distress. Future research should focus on multi-level interventions targeting system-, provider-, and patient-level factors.

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