Abstract
The measurement of health-related quality of life (HRQoL) has become essential for evaluating the impact of neuroendocrine tumors (NETs) on symptoms, as well as the social, emotional, psychological, and physical functioning of these patients. In this chapter, we describe two tools that have been developed to assess the wide spectrum of NET symptoms, determine the impact of this disease on patient’s overall well-being, and discriminate between patients with tumors from those who are free of disease. We discuss the importance of adequate sensitivity, specificity, and reproducibility. Psychometric factor analysis was utilized to explore the various ways that these tumors manifest themselves and to help determine a patient’s tumor burden, biochemical and hormonal status. First, we present data on the use of generic tools to evaluate responses to NET interventions. We then focus on two specific tools that have been developed and validated specifically to quantify health-related quality of life (QoL) in patients with NETs. There are distinct similarities between these tools, the EORTC QLQ-GI.NET21 and the Norfolk QoL-NET, but the unique differences favor the use of the Norfolk QoL-NET for clinical trials.
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Vinik, A.I., Vinik, E., Diebold, A., Woltering, E. (2014). Measuring the Relationship of Quality of Life and Health Status: Including Tumor Burden, Symptoms, and Biochemical Measures in Patients with Neuroendocrine Tumors. In: Raymond, E., Faivre, S., Ruszniewski, P. (eds) Management of Neuroendocrine Tumors of the Pancreas and Digestive Tract. Springer, Paris. https://doi.org/10.1007/978-2-8178-0430-9_14
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