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Measuring the Relationship of Quality of Life and Health Status: Including Tumor Burden, Symptoms, and Biochemical Measures in Patients with Neuroendocrine Tumors

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Management of Neuroendocrine Tumors of the Pancreas and Digestive Tract

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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Author information

Authors and Affiliations

  1. Eastern Virginia Medical School, Strelitz Diabetes Center for Endocrine and Metabolic Disorders and Neuroendocrine Unit, 855 W Brambleton Avenue, Norfolk, VA, 23510, USA

    Aaron I. Vinik & Etta Vinik

  2. Louisiana State University Heath Sciences Center, New Orléans Neuroendocrine Tumor Specialists, Kenner, LA, 70065, USA

    Anne Diebold & Eugene Woltering

Authors
  1. Aaron I. Vinik
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  2. Etta Vinik
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  3. Anne Diebold
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  4. Eugene Woltering
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Corresponding author

Correspondence to Aaron I. Vinik .

Editor information

Editors and Affiliations

  1. Medical Oncology, Bichat-Beaujon University Hospitals, Clichy cedex, France

    Eric Raymond

  2. Bichat-Beaujon University Hospitals Medical Oncology, Clichy cedex, France

    Sandrine Faivre

  3. Pancreatology, Bichat-Beaujon University Hospitals Gastroenterology and, Clichy cedex, France

    Philippe Ruszniewski

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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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  • DOI: https://doi.org/10.1007/978-2-8178-0430-9_14

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  • Publisher Name: Springer, Paris

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  • Online ISBN: 978-2-8178-0430-9

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