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

被引:50
作者
Atila, Cihan [1 ,2 ]
Loughrey, Paul Benjamin [3 ,4 ]
Garrahy, Aoife [5 ]
Winzeler, Bettina [1 ,2 ]
Refardt, Julie [1 ,2 ]
Gildroy, Patricia [6 ]
Hamza, Malak [7 ]
Pal, Aparna [5 ]
Verbalis, Joseph G. [14 ]
Thompson, Christopher J. [9 ,10 ]
Hemkens, Lars G. [2 ,15 ,16 ,17 ]
Hunter, Steven J. [3 ]
Sherlock, Mark [9 ,10 ]
Levy, Miles J. [7 ]
Karavitaki, Niki [11 ,12 ,13 ]
Newell-Price, John [8 ]
Wass, John A. H. [5 ]
Christ-Crain, Mirjam [1 ,18 ]
机构
[1] Univ Hosp Basel, Dept Endocrinol Diabetol & Metab, Basel, Switzerland
[2] Univ Hosp Basel, Univ Basel, Dept Clin Res, Basel, Switzerland
[3] Royal Victoria Hosp, Reg Ctr Endocrinol & Diabet, Belfast, North Ireland
[4] Queens Univ Belfast, Patrick Johnston Ctr Canc Res G, Belfast, North Ireland
[5] Churchill Hosp, Oxford Ctr Diabet, Dept Endocrinol Endocrinol & Metab, Oxford, England
[6] Got Diabet Insipidus, Eugene, OR USA
[7] Univ Hosp Leicester, Dept Endocrinol, Leicester, England
[8] Univ Sheffield, Dept Oncol & Metab, Sheffield, England
[9] Beaumont Hosp, Dept Endocrinol, Dublin, Ireland
[10] Royal Coll Surgeons Ireland, Dublin, Ireland
[11] Univ Birmingham, Inst Metab & Syst Res, Birmingham, England
[12] Birmingham Hlth Partners, Ctr Endocrinol Diabet & Metab, Birmingham, England
[13] Univ Hosp Birmingham, NHS Fdn Trust, Birmingham, England
[14] Georgetown Univ, Med Ctr, Washington, DC USA
[15] Univ Basel, Univ Hosp Basel, Res Ctr Clin Neuroimmunol & Neurosci Basel, Basel, Switzerland
[16] Stanford Univ, Meta Res Innovat Ctr Stanford, Stanford, CA USA
[17] Berlin Inst Hlth, Meta Res Innovat Ctr Berlin, Berlin, Germany
[18] Univ Hosp Basel, Dept Endocrinol Diabet & Metab, CH-4031 Basel, Switzerland
基金
瑞士国家科学基金会;
关键词
QUALITY-OF-LIFE; DESMOPRESSIN; SAFETY; DEFICIENCY; DIAGNOSIS; CHILDREN; ADULTS;
D O I
10.1016/S2213-8587(22)00219-4
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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 [0middot23-0middot29]) 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 0middot55 [95% CI 0middot39-0middot77]; p=0middot0006). Of patients who had to be hospitalised for any medical reason, 71 (13%; 95% CI 0middot10-0middot16) 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%; 0middot61-0middot67) participants reported lower quality of life, and 369 (36%; 0middot33-0middot39) had psychological changes subjectively associated with their central diabetes insipidus. 823 (80%; 0middot77-0middot82) participants encountered a situation where central diabetes insipidus was confused with diabetes mellitus (diabetes) by health-care professionals. 884 (85%; 0middot83-0middot88) 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.Copyright (c) 2022 Elsevier Ltd. All rights reserved.
引用
收藏
页码:700 / 709
页数:10
相关论文
共 30 条
[1]   Desmopressin acetate (DDAVP)-associated hyponatremia and brain damage: a case series [J].
Achinger, Steven G. ;
Arieff, Allen Israel ;
Kalantar-Zadeh, Kamyar ;
Ayus, Juan Carlos .
NEPHROLOGY DIALYSIS TRANSPLANTATION, 2014, 29 (12) :2310-2315
[2]   Efficacy and safety of desmopressin orally disintegrating tablet in patients with central diabetes insipidus: results of a multicenter open-label dose-titration study [J].
Arima, Hiroshi ;
Oiso, Yutaka ;
Juul, Kristian Vinter ;
Norgaard, Jens Peter .
ENDOCRINE JOURNAL, 2013, 60 (09) :1085-1094
[3]   Low Plasma Oxytocin Levels and Increased Psychopathology in Hypopituitary Men With Diabetes Insipidus [J].
Aulinas, Anna ;
Plessow, Franziska ;
Asanza, Elisa ;
Silva, Lisseth ;
Marengi, Dean A. ;
Fan, WuQiang ;
Abedi, Parisa ;
Verbalis, Joseph ;
Tritos, Nicholas A. ;
Nachtigall, Lisa ;
Faje, Alexander T. ;
Miller, Karen K. ;
Lawson, Elizabeth A. .
JOURNAL OF CLINICAL ENDOCRINOLOGY & METABOLISM, 2019, 104 (08) :3181-3191
[4]   Inpatient management of cranial diabetes insipidus [J].
Baldeweg, S. E. ;
Ball, S. ;
Brooke, A. ;
Gleeson, H. K. ;
Levy, M. J. ;
Prentice, M. ;
Wass, J. .
ENDOCRINE CONNECTIONS, 2018, 7 (07) :G8-G11
[5]   Abnormal plasma sodium concentrations in patients treated with desmopressin for cranial diabetes insipidus: results of a long-term retrospective study [J].
Behan, L. A. ;
Sherlock, M. ;
Moyles, P. ;
Renshaw, O. ;
Thompson, C. J. T. ;
Orr, C. ;
Holte, K. ;
Salehmohamed, M. R. ;
Glynn, N. ;
Tormey, W. ;
Thompson, C. J. .
EUROPEAN JOURNAL OF ENDOCRINOLOGY, 2015, 172 (03) :243-250
[6]  
BLOTNER H, 1958, METABOLISM, V7, P191
[7]   Pathophysiology, diagnosis and management of nephrogenic diabetes insipidus [J].
Bockenhauer, Detlef ;
Bichet, Daniel G. .
NATURE REVIEWS NEPHROLOGY, 2015, 11 (10) :576-588
[8]   Health-Related Quality of Life in Pituitary Diseases [J].
Crespo, Iris ;
Valassi, Elena ;
Santos, Alicia ;
Webb, Susan M. .
ENDOCRINOLOGY AND METABOLISM CLINICS OF NORTH AMERICA, 2015, 44 (01) :161-+
[9]   Diabetes Insipidus - Diagnosis and Management [J].
Di Iorgi, Natascia ;
Napoli, Flavia ;
Allegri, Anna Elsa Maria ;
Olivieri, Irene ;
Bertelli, Enrica ;
Gallizia, Annalisa ;
Rossi, Andrea ;
Maghnie, Mohamad .
HORMONE RESEARCH IN PAEDIATRICS, 2012, 77 (02) :69-84
[10]   Management of cranial diabetes insipidus: clinical outcomes and patient perception of care [J].
Dilrukshi, M. D. S. A. ;
Vickars, Marcus ;
May, Christine J. H. ;
Makaya, Taffy ;
Ryan, Fiona ;
Jafar-Mohammadi, Bahram ;
Wass, John A. H. ;
Pal, Aparna ;
Garrahy, Aoife .
EUROPEAN JOURNAL OF ENDOCRINOLOGY, 2022, 187 (03) :489-495