title: Living with a hereditary form of cancer: experiences and needs of MEN 2 patients and their families.
abstract: Unlike the purely medical research done in multiple endocrine neoplasia type 2 (MEN 2) families, little work has been done on the psychosocial aspects of the disease. To assess the severely stressful influences and the consequences of that stress on the family network, a small-scale survey was carried out during a national meeting. The goal of the study was to obtain more information about the experiences and needs of MEN 2 patients and their relatives. Of the 59 respondents, 85% were satisfied with the medical information provided, 81% were satisfied with the medical knowledge of the specialist, but only 12% were satisfied with the medical knowledge of the general practitioner regarding MEN 2. Furthermore, 63% of the parents had difficulties in talking about the disease with their children. The need expressed for contact with fellow sufferers and their families is expected to lead to the establishment of an interest group for MEN 2 families.
authors.forename: M P
authors.initials: MP
authors.lastname: Cleiren
authors.forename: W
authors.initials: W
authors.lastname: Oskam
authors.forename: C J
authors.initials: CJ
authors.lastname: Lips
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009377:Multiple Endocrine Neoplasia / Q000523:psychology*; D009426:Netherlands; D012931:Social Environment; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*