Central diabetes insipidus from a patient's perspective: management, psychological co-morbidities, and renaming of the condition: results from an international web-based survey.

Autor:	Atila C; Department of Endocrinology, Diabetology and Metabolism, University Hospital Basel, Basel, Switzerland; Department of Clinical Research, University Hospital Basel, University of Basel, Basel, Switzerland., Loughrey PB; Regional Centre for Endocrinology and Diabetes, Royal Victoria Hospital, Belfast, UK; Patrick G Johnston Centre for Cancer Research, Queen's University Belfast, UK., Garrahy A; Department of Endocrinology, Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill Hospital, Oxford, UK., Winzeler B; Department of Endocrinology, Diabetology and Metabolism, University Hospital Basel, Basel, Switzerland; Department of Clinical Research, University Hospital Basel, University of Basel, Basel, Switzerland., Refardt J; Department of Endocrinology, Diabetology and Metabolism, University Hospital Basel, Basel, Switzerland; Department of Clinical Research, University Hospital Basel, University of Basel, Basel, Switzerland., Gildroy P; Got Diabetes Insipidus?, Eugene, OR, USA., Hamza M; Department of Endocrinology, University Hospitals of Leicester, Leicester, UK., Pal A; Department of Endocrinology, Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill Hospital, Oxford, UK., Verbalis JG; Georgetown University Medical Center, Washington DC, USA., Thompson CJ; Department of Endocrinology, Beaumont Hospital, Dublin, Ireland; Royal College of Surgeons in Ireland, Dublin, Ireland., Hemkens LG; Department of Clinical Research, University Hospital Basel, University of Basel, Basel, Switzerland; Research Center for Clinical Neuroimmunology and Neuroscience Basel, University Hospital Basel and University of Basel, Basel, Switzerland; Meta-Research Innovation Center at Stanford, Stanford University, Stanford, CA, USA; Meta-Research Innovation Center Berlin, Berlin Institute of Health, Berlin, Germany., Hunter SJ; Regional Centre for Endocrinology and Diabetes, Royal Victoria Hospital, Belfast, UK., Sherlock M; Department of Endocrinology, Beaumont Hospital, Dublin, Ireland; Royal College of Surgeons in Ireland, Dublin, Ireland., Levy MJ; Department of Endocrinology, University Hospitals of Leicester, Leicester, UK., Karavitaki N; Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK; Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, UK; University Hospitals Birmingham, NHS Foundation Trust, Birmingham, UK., Newell-Price J; Department of Oncology and Metabolism, University of Sheffield, Sheffield, UK., Wass JAH; Department of Endocrinology, Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill Hospital, Oxford, UK., Christ-Crain M; Department of Endocrinology, Diabetology and Metabolism, University Hospital Basel, Basel, Switzerland; Department of Clinical Research, University Hospital Basel, University of Basel, Basel, Switzerland. Electronic address: mirjam.christ-crain@usb.ch.
Jazyk:	angličtina
Zdroj:	The lancet. Diabetes & endocrinology [Lancet Diabetes Endocrinol] 2022 Oct; Vol. 10 (10), pp. 700-709. Date of Electronic Publication: 2022 Aug 22.
DOI:	10.1016/S2213-8587(22)00219-4
Abstrakt:	Background: Central diabetes insipidus is a rare neuroendocrine condition. Data on treatment-associated side-effects, psychological comorbidities, and incorrect management are scarce. The aim of this study was to investigate patients' perspectives on their disease. Methods: This study used a cross-sectional, web-based, anonymous survey, developed by endocrinologists and patient representatives, to collect the opinions of patients with central diabetes insipidus on management and complications of their disease, psychological comorbidities, degree of knowledge and awareness of the condition among health-care professionals, and renaming the disease to avoid confusion with diabetes mellitus (diabetes). Findings: Between Aug 23, 2021, and Feb 7, 2022, 1034 patients with central diabetes insipidus participated in the survey. 91 (9%) participants were children and adolescents (37 [41%] girls and 54 [59%] boys; median age 10 years [IQR 6-15]) and 943 (91%) were adults (757 [80%] women and 186 [20%] men]; median age 44 years [34-54]). 488 (47%) participants had isolated posterior pituitary dysfunction and 546 (53%) had combined anterior and posterior pituitary dysfunction. Main aetiologies were idiopathic (315 [30%] of 1034 participants) and tumours and cysts (pre-surgical 217 [21%]; post-surgical 254 [25%]). 260 (26%; 95% CI [0·23-0·29]) of 994 patients on desmopressin therapy had hyponatraemia leading to hospitalisation. Patients who routinely omitted or delayed desmopressin to allow intermittent aquaresis had a significantly lower prevalence of hyponatraemia compared with those not aware of this approach (odds ratio 0·55 [95% CI 0·39-0·77]; p=0·0006). Of patients who had to be hospitalised for any medical reason, 71 (13%; 95% CI 0·10-0·16) of 535 patients did not receive desmopressin while in a fasting state (nil by mouth) without intravenous fluid replacement and reported symptoms of dehydration. 660 (64%; 0·61-0·67) participants reported lower quality of life, and 369 (36%; 0·33-0·39) had psychological changes subjectively associated with their central diabetes insipidus. 823 (80%; 0·77-0·82) participants encountered a situation where central diabetes insipidus was confused with diabetes mellitus (diabetes) by health-care professionals. 884 (85%; 0·83-0·88) participants supported renaming the disease; the most favoured alternative names were vasopressin deficiency and arginine vasopressin deficiency. Interpretation: This is the largest survey of patients with central diabetes insipidus, reporting a high prevalence of treatment-associated side-effects, mismanagement during hospitalisation, psychological comorbidities, and a clear support for renaming the disease. Our data are the first to indicate the value of routinely omitting or delaying desmopressin. Funding: Swiss National Science Foundation, Swiss Academy of Medical Sciences, and G&J Bangerter-Rhyner-Foundation. Competing Interests: Declaration of interests We declare no competing interests. (Copyright © 2022 Elsevier Ltd. All rights reserved.)
Databáze:	MEDLINE
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