PMID- 17277996
OWN - NLM
STAT- MEDLINE
DCOM- 20070531
LR  - 20190122
IS  - 1059-7700 (Print)
IS  - 1059-7700 (Linking)
VI  - 16
IP  - 1
DP  - 2007 Feb
TI  - 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.
PG  - 105-17
AB  - 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.
FAU - Stromsvik, Nina
AU  - Stromsvik N
AD  - Center of Medical Genetics and Molecular Medicine, Haukeland University Hospital, 
      Bergen, Norway. nina@tbt.no
FAU - Nordin, Karin
AU  - Nordin K
FAU - Berglund, Gunilla
AU  - Berglund G
FAU - Engebretsen, Lars F
AU  - Engebretsen LF
FAU - Hansson, Mats G
AU  - Hansson MG
FAU - Gjengedal, Eva
AU  - Gjengedal E
LA  - eng
PT  - Journal Article
PT  - Research Support, Non-U.S. Gov't
DEP - 20070203
PL  - United States
TA  - J Genet Couns
JT  - Journal of genetic counseling
JID - 9206865
SB  - IM
MH  - Follow-Up Studies
MH  - *Genetic Counseling
MH  - Humans
MH  - Multiple Endocrine Neoplasia Type 1/genetics/psychology/*therapy
MH  - Quality of Life
MH  - Sweden
EDAT- 2007/02/06 09:00
MHDA- 2007/06/01 09:00
CRDT- 2007/02/06 09:00
PHST- 2005/11/08 00:00 [received]
PHST- 2006/06/23 00:00 [accepted]
PHST- 2007/02/06 09:00 [pubmed]
PHST- 2007/06/01 09:00 [medline]
PHST- 2007/02/06 09:00 [entrez]
AID - 10.1007/s10897-006-9047-2 [doi]
PST - ppublish
SO  - J Genet Couns. 2007 Feb;16(1):105-17. doi: 10.1007/s10897-006-9047-2. Epub 2007 
      Feb 3.