Abstract
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.
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An erratum to this article can be found at http://dx.doi.org/10.1023/A:1025720911688
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Berglund, G., Lidén, A., Hansson, M.G. et al. Quality of life in patients with multiple endocrine neoplasia type 1 (MEN1). Familial Cancer 2, 27–33 (2003). https://doi.org/10.1023/A:1023252107120
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DOI: https://doi.org/10.1023/A:1023252107120