Quality of life in patients with multiple endocrine neoplasia type 1 (MEN 1).
To study quality of life among patients living with a hereditary tumor syndrome, the small group with multiple endocrine neoplasia type 1 (MEN1) was selected. It is characterized by multifocal adenomas of the pancreas, parathyroid, anterior pituitary and other endocrine glands. Patients were assessed at an in-hospital stay and six months later at home. Patients at a specialist ward for MEN1 were recruited consecutively (n = 36) during one year. Eighty-one percent participated (n = 29). Four questionnaires were used: the Hospital Anxiety and Depression Scale (HADS), the Impact of Event Scale (IES), the Life Orientation Test (LOT) and the Short Form-36 (SF-36). Psychosocial outcome measures (anxiety, depression, intrusion, avoidance) changed only marginally between the in hospital stay and six months later at home. However, depression increased for patients categorized as having a high burden of disease and treatment. Compared to population-based norm values, the SF-36 scores of the patient group MEN1were lower for General Health and Social Functioning. Optimism assessed at the hospital was a predictor of Mental Health six months later. Most MEN 1 patients (70%) were pessimists. Patients having a higher burden of disease and treatment are in need of support after discharge. Patients could easily be monitored with questionnaires and, when indicated, offered help for their psychosocial distress.
Berglund
G
G
Department of Public Health and Caring Sciences, Uppsala University, Uppsala Science Park, S-751 83, Uppsala, Sweden. gunilla.berglund@pubcare.uu.se
Lidén
A
A
Hansson
M G
MG
Oberg
K
K
Sjöden
P O
PO
Nordin
K
K
D000328:Adult; D000368:Aged; D001007:Anxiety; D017281:Cost of Illness; D003863:Depression / Q000209:etiology*; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D018761:Multiple Endocrine Neoplasia Type 1 / Q000150:complications* / Q000523:psychology*; D011446:Prospective Studies; D011788:Quality of Life; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires