Oncotarget

Research Papers:

Perspectives of patients and physicians about neuroendocrine tumors. A qualitative study

Jordan Sibeoni _, Wafaa Khannoussi, Emilie Manolios, Vinciane Rebours, Anne Revah-Levy and Philippe Ruszniewski

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Oncotarget. 2018; 9:14138-14147. https://doi.org/10.18632/oncotarget.24347

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Abstract

Jordan Sibeoni1,2,*, Wafaa Khannoussi3,*, Emilie Manolios2,5, Vinciane Rebours3,4, Anne Revah-Levy1,2,# and Philippe Ruszniewski3,4,#

1Service Universitaire de Psychiatrie de l’Adolescent, Argenteuil Hospital Centre, Argenteuil, France

2ECSTRA Team, UMR-1153, Inserm, Paris Diderot University, Sorbonne Paris Cité, France

3Service de Gastroentérologie et Pancréatologie, Hôpital Beaujon, DHU UNITY, APHP, Clichy, France

4Inserm UMR1149, Université Paris–Diderot, Paris 7, France

5Service de Psychiatrie Adultes et du Sujet Agé, Unité Fonctionnelle de Psychologie et Psychiatrie de Liaison, AP-HP, Hôpitaux Universitaires Paris Ouest, Paris, France

*These authors contributed equally to this work

#These authors are co-senior authors

Correspondence to:

Jordan Sibeoni, email: [email protected]

Keywords: qualitative research; oncology; neuroendocrine tumors; gastrointestinal cancers

Received: September 06, 2017     Accepted: January 22, 2018     Epub: January 31, 2018     Published: March 06, 2018

ABSTRACT

Purpose: Gastrointestinal neuroendocrine tumors (NETs) are rare, complex to manage, and often have a chronic course. Qualitative methods are a tool of choice for focusing on patients' and physicians’ points of view especially when dealing with a complex and rare disease. Nonetheless, they remain undeveloped in research related to NETs. This study aimed to explore the experience of NETs among both patients and their physicians and to cross their perspectives for the purpose of finding pathways to improving care.

Results: Our analysis found two themes: (1) the questions raised by this disease, and (2) the complex experience of this singular disease. Our findings underlined the experience of confusion found among patients regarding the patient's unusual somatic experience and around the question of vocabulary, i.e. the naming of the disease and the semantic field of severity in the medical discourse.

Conclusion: Means for reducing the confusion that patients experience in this disease are needed. The explanations that the physician offers to the patient must clarify the issues related to NETs. We therefore propose a statement that all physicians can use to support patients diagnosed with neuroendocrine tumors to clear up potential confusion.

Methods: We conducted a qualitative study, based on 40 semi-structured interviews, in a specialized department of gastro-pancreatology. Participants, purposively selected until data saturation, came from two different sub-samples: (i) patients with a metastatic NETs (N = 20) and (ii) their referring physicians (N = 10). The data were examined by thematic analysis.


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