VIGNON Salomé

Titre de thèse : The daily lives and challenges of families affected by Multiple Endocrine Neoplasia type 1 (MEN1) 

Année d'inscription : 2023

Co-directeurs : Pr Marie PREAU et Pr Christine BINQUET (Université Bourgogne Europe)

Multiple Endocrine Neoplasia type 1 (MEN1) affects 1 in 30,000 individuals. It is characterised by the development of multiple endocrine tumours of varying severity throughout life. As soon as the disease is diagnosed, annual follow-up is required, due to the risk of new tumour lesions, which may require major surgery. In addition, the hereditary aspect of NME1 raises questions about parenthood and the associated family issues. It therefore seems crucial to understand how families adjust to this disease and the medical requirements it imposes, in order to provide them with better support. It also seems important to understand the posture and clinical and support practices of the doctors who follow these patients in the face of the specific features of NME1. Using a qualitative methodology and putting into perspective the relationships between people with NME1, their relatives and doctors, this thesis project aims to develop an in-depth understanding of the experiences and quality of life of patients and their relatives.