ASO Author Reflections: Supporting Neuroendocrine Tumor Patients at the End of Life by Understanding Symptom Trajectories

Excerpt

The unique hormonal secretion patterns of neuroendocrine tumor (NET) combined with a prolonged natural history can lead to debilitating systemic symptoms and poor quality of life. The best way to support NET patients is unknown. Data on NET patients’ experience, symptom burden, and quality of life have traditionally focused on the initial period of care, before or immediately after diagnosis. These cross-sectional studies have relied on volunteered patient surveys and quality-of-life questionnaires.1,2 No information exists regarding patient experience and symptoms at the end of life when control of symptoms is critical and may be particularly burdensome.3 Knowledge of symptom trajectories over time is critical to improvement of interventions to control symptoms and better support patients. This study sought to examine symptom trajectories and factors associated with symptom severity for NET patients at the end of life using prospectively collected patient-reported outcomes measures (PROMs).4 …