Care trajectory, informational needs and challenges of patients with neuroendocrine tumors – A mixed methods study

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Introduction: Patients with neuroendocrine tumors (NET) encounter different challenges, including delayed diagnosis and difficulty finding NET-specific information of high-quality.

Aim(s): The objective was to document NET patients’ care trajectory and explore their informational needs. The study also aimed to report challenges patients faced throughout the course of their disease, more specifically when trying to obtain information, as well as identify patient-based solutions.

Materials and methods: Thirteen NET patients were recruited and completed a questionnaire to collect sociodemographic and disease-related data. Semi-structured interviews were conducted with each patient alone or with their spouse. Interviews were transcribed verbatim and analysis was conducted using principles of grounded theory.

Conference:

Presenting Author:

Authors: Bénard F, Mercier F, Huez S, Pomey M,

Keywords: neuroendocrine, cancer, needs, information, challenges,