PMID- 32365349
OWN - NLM
STAT- MEDLINE
DCOM- 20211027
LR  - 20211027
IS  - 1423-0194 (Electronic)
IS  - 0028-3835 (Linking)
VI  - 111
IP  - 3
DP  - 2021
TI  - Health-Related Quality of Life in Patients with Multiple Endocrine Neoplasia Type 
      1.
PG  - 288-296
LID - 10.1159/000508374 [doi]
AB  - INTRODUCTION: Multiple endocrine neoplasia type 1 (MEN1) is a hereditary 
      endocrine tumor syndrome characterized by the triad of primary 
      hyperparathyroidism, duodenopancreatic neuroendocrine tumors (pNETs), and 
      pituitary tumors. Patients are confronted with substantial morbidity and are 
      consequently at risk for an impaired quality of life (QOL). Meticulous assessment 
      of QOL and associated factors in a representative population is needed to 
      understand the full spectrum of the burden of the disease. PATIENTS AND METHODS: 
      A cross-sectional study was performed using the national Dutch MEN1 cohort. 
      Patients with a confirmed MEN1 mutation received the SF-36 Health Related Quality 
      of Life questionnaire and questions regarding sociodemographic and medical 
      history. RESULTS: A total of 227 of 285 (80%) eligible MEN1 patients returned the 
      questionnaires. Health-related QOL scores (HRQOL) in MEN1 patients were 
      significantly lower for the majority of subscales of the SF-36 in comparison with 
      the general Dutch population. The most consistent predictor for HRQOL was 
      employment status, followed by the presence of a pituitary tumor. 16% of patients 
      harboring a pNET and 29% of patients with a pituitary tumor according to the 
      medical records, reported that they were unaware of such a tumor. These subgroups 
      of patients had several significant better QOL scores than patients who were 
      aware of their pNET or pituitary tumors. CONCLUSION: Patients with MEN1 have an 
      impaired QOL in comparison with the general Dutch population warranting special 
      attention within routine care. For daily practice, physicians should be aware of 
      their patients' impaired QOL and of the impact of unemployment on QOL.
CI  - (c) 2020 The Author(s) Published by S. Karger AG, Basel.
FAU - van Leeuwaarde, Rachel S
AU  - van Leeuwaarde RS
AD  - Department of Endocrine Oncology, University Medical Center Utrecht, University 
      of Utrecht, Utrecht, The Netherlands, r.vanleeuwaarde@umcutrecht.nl.
FAU - Pieterman, Carolina R C
AU  - Pieterman CRC
AD  - Dutch MEN advocacy group, Department of Endocrine Oncology, University Medical 
      Center Utrecht, University of Utrecht, Utrecht, The Netherlands.
FAU - May, Anne M
AU  - May AM
AD  - Department of Clinical Epidemiology, Julius Center for Health Sciences and 
      Primary Care, University Medical Center Utrecht, University of Utrecht, Utrecht, 
      The Netherlands.
FAU - Dekkers, Olaf M
AU  - Dekkers OM
AD  - Departments of Endocrinology and Metabolism and Clinical Epidemiology, Leiden 
      University Medical Center, Leiden, The 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, The Netherlands.
FAU - Hermus, Ad R
AU  - Hermus AR
AD  - Department of Endocrinology, Radboud University Medical Center, Nijmegen, The 
      Netherlands.
FAU - de Herder, Wouter W
AU  - de Herder WW
AD  - Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The 
      Netherlands.
FAU - Drent, Madeleine L
AU  - Drent ML
AD  - Department of Internal Medicine, Section of Endocrinology, VU University Medical 
      Center, Amsterdam, The Netherlands.
FAU - Bisschop, Peter H
AU  - Bisschop PH
AD  - Department of Endocrinology and Metabolism, Academic Medical Center, Amsterdam, 
      The Netherlands.
FAU - Havekes, Bas
AU  - Havekes B
AD  - Department of Internal Medicine, Division of Endocrinology, Maastricht University 
      Medical Center, Maastricht, The Netherlands.
FAU - Vriens, Menno R
AU  - Vriens MR
AD  - Department of Endocrine Surgery, University Medical Center Utrecht, University of 
      Utrecht, Utrecht, The Netherlands.
FAU - Valk, Gerlof D
AU  - Valk GD
AD  - Department of Endocrine Oncology, University Medical Center Utrecht, University 
      of Utrecht, Utrecht, The Netherlands.
LA  - eng
PT  - Journal Article
DEP - 20200504
PL  - Switzerland
TA  - Neuroendocrinology
JT  - Neuroendocrinology
JID - 0035665
SB  - IM
MH  - Adult
MH  - *Cost of Illness
MH  - Cross-Sectional Studies
MH  - Female
MH  - Humans
MH  - Male
MH  - Middle Aged
MH  - *Multiple Endocrine Neoplasia Type 1/psychology
MH  - Netherlands
MH  - *Quality of Life/psychology
MH  - Unemployment/psychology
OTO - NOTNLM
OT  - Multiple endocrine neoplasia type 1
OT  - Quality of life
OT  - Short Form 36 questionnaire
EDAT- 2020/05/05 06:00
MHDA- 2021/10/28 06:00
CRDT- 2020/05/05 06:00
PHST- 2019/10/08 00:00 [received]
PHST- 2020/05/01 00:00 [accepted]
PHST- 2020/05/05 06:00 [pubmed]
PHST- 2021/10/28 06:00 [medline]
PHST- 2020/05/05 06:00 [entrez]
AID - 000508374 [pii]
AID - 10.1159/000508374 [doi]
PST - ppublish
SO  - Neuroendocrinology. 2021;111(3):288-296. doi: 10.1159/000508374. Epub 2020 May 4.