People with MEN syndrome (Multiple Endocrine Neoplasia) have a chance of developing endocrine tumors at a young age. This rare syndrome is hereditary. If one of the parents has it, each child has a 50% chance of developing MEN. These children therefore undergo genetic testing to determine whether they have the predisposition for the disease. If a child has the predisposition, it is screened with the aim of detecting tumors at an early stage. For those affected, this can lead to feelings of anxiety or other psychosocial consequences.
Daniël Zwerus studies the psychosocial consequences of MEN and screening for disease manifestations in children and their relatives. He graduated as a medical psychologist and is (among other groups) currently part of the psycho-oncology group of prof. dr. Martha Grootenhuis.
This study will investigate the psychosocial consequences of screening for tumours in children and their relatives. For example, the quality of life and the fear that patients experience in relation to disease manifestations will be examined. It will also look into which factors could explain a reduced quality of life. The aim of this study is to improve the counselling of children with MEN-syndrome and their relatives to offer tailor-made care at an early stage. All this is done to try to limit the long-term consequences for patients.
The KIDS&MEN project is a unique collaboration between both UMC Utrecht, Wilhelmina Children’s Hospital (WKZ) and the Princess Máxima Center.
Those directly involved are dr. Hanneke van Santen (WKZ and Princess Máxima Center), prof. dr. Gerlof Valk (UMC Utrecht), dr. Rachel van Leeuwaarde (UMC Utrecht), dr. Sasja Schepers (Princess Máxima Center) and dr. Annemarie Verrijn Stuart (WKZ).