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.
Department of Public Health and Caring Sciences, Uppsala University, Uppsala Science Park, S-751 83, Uppsala, Sweden. gunilla.berglund@pubcare.uu.se
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G
Berglund
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A
Lidén
M G
MG
Hansson
K
K
Oberg
P O
PO
Sjöden
K
K
Nordin
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