High fear of disease occurrence is associated with low quality of life in patients with Multiple Endocrine Neoplasia type 1 (MEN1): Results from the Dutch MEN1 Study Group.

High fear of disease occurrence is associated with low quality of life in patients with Multiple Endocrine Neoplasia type 1 (MEN1): Results from the Dutch MEN1 Study Group.

J Clin Endocrinol Metab. 2018 Mar 30;:

Authors: van Leeuwaarde RS, Pieterman CRC, Bleiker EMA, Dekkers OM, van der Horst-Schrivers AN, Hermus AR, de Herder WW, Drent ML, Bisschop PH, Havekes B, Vriens MR, Valk GD

Abstract
Objective: Multiple Endocrine Neoplasia type 1 (MEN1) is a hereditary disease characterized by a high risk of developing primary hyperparathyroidism, duodenopancreatic neuroendocrine tumors (dpNETs) and pituitary tumors (PIT). Up to now, it is unclear if having MEN1 leads to psychological distress because of fear of disease occurrence (FDO), thereby potentially affecting quality of life.
Design: A cross-sectional study was performed using the Dutch MEN1 cohort. All patients received the Cancer Worry Scale (score ≥ 14 reflecting high FDO), the SF-36 Health Related Quality of Life questionnaire (SF-36) and questions on sociodemographic and medical history.
Results: A total of 227 of 285 (80%) eligible MEN1 patients completed the questionnaire. The mean age was 47 years (SD±15). Overall patients experienced a FDO of 15.1 (SD±4.7), with 58% of patients having a score ≥ 14. This is higher than reported in previous studies assessing fear of cancer recurrence in different cancer populations (31-52%). Adjusted for age and gender, the FDO score was negatively associated to almost all SF-36 subscales. In multivariable analysis the diagnosis of a PIT, a pNET and not being employed were associated to FDO (P<0.05). Patients had higher FDO scores for their family members than for themselves.
Conclusion: The majority of MEN1 patients have fear of disease occurrence for themselves and even more for their relatives. This psychological distress is associated with a lower health related quality of life. Therefore, in the medical care for MEN1, emphasis should also be placed on fear of disease occurrence and quality of life.

PMID: 29618015 [PubMed - as supplied by publisher]

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