Grant: Project Grant

Neuronendocrine tumors (NETs) are one of the fastest growing cancers. They can arise in any organ, but most commonly in the stomach, intestine, pancreas, and lungs. They are slow growing tumors that can secrete hormones creating debilitating symptoms. Over 50% of patients will present with metastases that are incurable, but can be managed for a prolonged time. However, the optimal sequence of therapy is unknown and NETs lack standardized care. Furthermore, NETs have been reported to be uniquely tied to neuropsychological diseases (due to hormonal activity), but there is no evidence to guide patient support and address those special needs. Combining prolonged survival with active disease and hormonal production, and heterogeneous care, NETs can seriously impact patients' quality of life and experience, as well as healthcare resources utilization. Our study aims to use healthcare data collected from a cohort of NETs patients in Ontario, as well as speak directly with patients, caregivers, and physicians, to understand variation in clinical, patient-centred, and economic outcomes, and set priorities in improving NETs care. We will pay careful attention to the cancer care provided to patients who may be vulnerable to experiencing worse outcomes, such as the elderly, those with a mental illness, and those living in rural communities. This study will combine newly available province-wide data sources, including a patient-reported symptom screening tool and a novel Cancer Costing Algorithm. We will conduct a systematic analysis of clinical, economic, and patient-reported outcomes for NETs in Ontario (2004-2017). We will engage a group of patients, caregivers, healthcare providers, and policy-makers to interact with the research team and provide ongoing feedback on the project, and how to identify strategies to incorporate the information derived from the analysis into clinical practice.