Empowerment survey for patients with neuroendocrine tumors - A pilot study in Spanish population

Abstract

Introduction: Quality of life is very important in patients with neuroendocrine tumors (NET), but other aspects such as satisfaction and empowerment of patients have been less studied. In Spain, there is a lack of validated cancer empowerment questionnaires. Aim(s): The aim of the present study is to conduct a pilot test with an online survey of patient’s empowerment in NET in the Spanish population. Materials and methods: The Spanish survey was designed with previous general health empowerment questionnaires (Health Education Impact Questionnaire, Maunsell 2014), internal hospital satisfaction scores, and direct feedback from NET-España Patient Advocacy group. The final survey was approved by GETNE Academy taskforce. Anonymous online survey was conducted between August and November 2020 in NET patients from NET-España association in Spain. Results: 67 NET patients answered (95.5% completed all questions). Scale internal consistency was good. Most patients had medium or high levels of general empowerment-related to NET. We identified two main areas where most patients had a low level of empowerment, including psychological support and patient's self-management groups. Specific questions related to NET characteristics and NET-specific treatments reflect the situation of NET management in Spain and reveals a high knowledge about the biology of the disease and current available therapies. Conclusion: This NET empowerment survey is understandable, easy to answer, and useful to measure the empowerment of the Spanish population with NET. After this initial pilot experience, a larger study in an unselected population is necessary for the validation of this questionnaire.