title: Living with multiple endocrine neoplasia type 1: decent care-insufficient medical and genetic information: a qualitative study of MEN 1 patients in a Swedish hospital.
abstract: This qualitative study explores how 29 Swedish patients with Multiple Endocrine Neoplasia type 1 (MEN1) experience living with the condition, appraisal of the clinical follow-up program, and surveys their future expectations. The aim of this study is to build knowledge about this patient group in order to provide optimal care. The participants describe physical, psychological, and social limitations in their daily activities and how these limitations influence quality of life. Our findings indicate that a majority of patients have adjusted to their situation, describing themselves as being healthy despite physical symptoms and treatment. The participants received decent care in the clinical follow-up program, - however, greater effort should be put into patient information. These patients might benefit from genetic counseling. Health professionals involved should recognize their potential impact and influence on a patient's ability to adjust to these circumstances. Antonovsky's Sense of Coherence theory is used to discuss these findings.
authors.affiliation: Center of Medical Genetics and Molecular Medicine, Haukeland University Hospital, Bergen, Norway. nina@tbt.no
authors.forename: Nina
authors.initials: N
authors.lastname: Strømsvik
authors.forename: Karin
authors.initials: K
authors.lastname: Nordin
authors.forename: Gunilla
authors.initials: G
authors.lastname: Berglund
authors.forename: Lars F
authors.initials: LF
authors.lastname: Engebretsen
authors.forename: Mats G
authors.initials: MG
authors.lastname: Hansson
authors.forename: Eva
authors.initials: E
authors.lastname: Gjengedal
mesh_terms: D005500:Follow-Up Studies; D005817:Genetic Counseling; D006801:Humans; D018761:Multiple Endocrine Neoplasia Type 1 / Q000235:genetics / Q000523:psychology / Q000628:therapy*; D011788:Quality of Life; D013548:Sweden