PMID- 29618015
OWN - NLM
STAT- MEDLINE
DCOM- 20181231
LR  - 20181231
IS  - 1945-7197 (Electronic)
IS  - 0021-972X (Linking)
VI  - 103
IP  - 6
DP  - 2018 Jun 1
TI  - High Fear of Disease Occurrence Is Associated With Low Quality of Life in 
      Patients With Multiple Endocrine Neoplasia Type 1: Results From the Dutch MEN1 
      Study Group.
PG  - 2354-2361
LID - 10.1210/jc.2018-00259 [doi]
AB  - OBJECTIVE: Multiple endocrine neoplasia type 1 (MEN1) is a hereditary disease 
      characterized by a high risk of developing primary hyperparathyroidism, 
      duodenopancreatic neuroendocrine tumors, and pituitary tumors (PITs). 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 (a score >/=14 reflects high FDO), the Medical 
      Outcomes Study 36-item Short-Form Health Survey (SF-36), and questions on 
      sociodemographic and medical history. RESULTS: A total of 227 of 285 (80%) 
      eligible patients with MEN1 completed the questionnaire. The mean (+/- standard 
      deviation) age was 47 +/- 15 years. Overall, patients experienced an FDO of 15.1 +/- 
      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% to 52%). Adjusted for age and sex, the FDO score was negatively 
      associated with almost all SF-36 subscales. In multivariable analysis, the 
      diagnosis of a PIT, a pancreatic neuroendocrine tumor, and not being employed 
      were associated with FDO (P < 0.05). Patients had higher FDO scores for their 
      family members than for themselves. CONCLUSION: The majority of patients with 
      MEN1 have FDO 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 FDO 
      and quality of life.
FAU - van Leeuwaarde, Rachel S
AU  - van Leeuwaarde RS
AD  - Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, 
      Netherlands.
FAU - Pieterman, Carolina R C
AU  - Pieterman CRC
AD  - Dutch MEN Advocacy Group, Department of Endocrine Oncology, University Medical 
      Center Utrecht, Utrecht, Netherlands.
FAU - Bleiker, Eveline M A
AU  - Bleiker EMA
AD  - Department of Psychosocial Research and Epidemiology, The Netherlands Cancer 
      Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, Netherlands.
FAU - Dekkers, Olaf M
AU  - Dekkers OM
AD  - Department of Endocrinology and Metabolism, Leiden University Medical Center, 
      Leiden, Netherlands.
AD  - Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, 
      Netherlands.
FAU - van der Horst-Schrivers, Anouk N
AU  - van der Horst-Schrivers AN
AD  - Department of Endocrinology, University of Groningen, University Medical Center 
      Groningen, Groningen, Netherlands.
FAU - Hermus, Ad R
AU  - Hermus AR
AD  - Department of Endocrinology, Radboud University Medical Center, Nijmegen, 
      Netherlands.
FAU - de Herder, Wouter W
AU  - de Herder WW
AD  - Department of Internal Medicine, Erasmus Medical Center, Rotterdam, Netherlands.
FAU - Drent, Madeleine L
AU  - Drent ML
AD  - Department of Internal Medicine, Section of Endocrinology, VU University Medical 
      Center, Amsterdam, Netherlands.
FAU - Bisschop, Peter H
AU  - Bisschop PH
AD  - Department of Endocrinology and Metabolism, Academic Medical Center, Amsterdam, 
      Netherlands.
FAU - Havekes, Bas
AU  - Havekes B
AD  - Department of Internal Medicine, Division of Endocrinology, Maastricht University 
      Medical Center, Maastricht, Netherlands.
FAU - Vriens, Menno R
AU  - Vriens MR
AD  - Department of Endocrine Surgery, University Medical Center Utrecht, Utrecht, 
      Netherlands.
FAU - Valk, Gerlof D
AU  - Valk GD
AD  - Department of Endocrine Oncology, University Medical Center Utrecht, Utrecht, 
      Netherlands.
LA  - eng
PT  - Journal Article
PL  - United States
TA  - J Clin Endocrinol Metab
JT  - The Journal of clinical endocrinology and metabolism
JID - 0375362
SB  - IM
MH  - Adult
MH  - Cross-Sectional Studies
MH  - Fear/*psychology
MH  - Female
MH  - Humans
MH  - Male
MH  - Middle Aged
MH  - Multiple Endocrine Neoplasia Type 1/*psychology
MH  - Netherlands
MH  - Quality of Life/*psychology
MH  - Recurrence
MH  - Surveys and Questionnaires
EDAT- 2018/04/05 06:00
MHDA- 2019/01/01 06:00
CRDT- 2018/04/05 06:00
PHST- 2018/01/31 00:00 [received]
PHST- 2018/03/26 00:00 [accepted]
PHST- 2018/04/05 06:00 [pubmed]
PHST- 2019/01/01 06:00 [medline]
PHST- 2018/04/05 06:00 [entrez]
AID - 4956607 [pii]
AID - 10.1210/jc.2018-00259 [doi]
PST - ppublish
SO  - J Clin Endocrinol Metab. 2018 Jun 1;103(6):2354-2361. doi: 10.1210/jc.2018-00259.