Central diabetes insipidus from a patients’ perspective: management, psychological co-morbidities and re-naming of the condition

C. Atila*^a (Dr), PB. Loughrey^b (Dr), A. Garrahy^c (Dr), B. Winzeler^a (Dr), J. Refardt^a (Dr), M. Hamza^d (Dr), A. Pal^c (Dr), JG. Verbalis^e (Prof), CJ. Thompson^f (Prof), SJ. Hunter^b (Prof), M. Sherlock^f (Prof), MJ. Levy^d (Prof), N. Karavitaki^g (Prof), J. Newell-Price^h (Prof), J. Wass^c (Prof), M. Christ-Crain^a (Prof)

^a University Hospital Basel, Basel, SWITZERLAND ; ^b Regional Centre for Endocrinology and Diabetes, Royal Victoria Hospital, Belfast, UNITED KINGDOM ; ^c Department of Endocrinology, Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill Hospital, Oxford, UNITED KINGDOM ; ^d Department of Endocrinology, University Hospitals of Leicester, Leicester, UNITED KINGDOM ; ^e Georgetown University Medical Center, Washington, UNITED STATES ; ^f Department of Endocrinology, Beaumont Hospital, Dublin, IRELAND ; ^g Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UNITED KINGDOM ; ^h Dept of Oncology and Metabolism, University of Sheffield, Sheffield, UNITED KINGDOM

* cihan.atila@usb.ch

Introduction: Central diabetes insipidus (cDI) is a rare neuroendocrine condition. Data on treatment-related side effects, psychological co-morbidities, and incorrect management are scarce..

Methods: A web-based anonymous survey, developed by endocrinologists and patient representatives, assessing management of cDI, psychological co-morbidities, and level of awareness amongst medical professionals.

Results: 1034 patients with cDI participated, 47%(n=488) with isolated posterior and 53%(n=546) with combined anterior/posterior pituitary dysfunction. Main aetiologies were idiopathic 30%(n=315) and tumours/cysts (pre-surgical 21%(n=217), post-surgical 25%(n=254)).

Among patients on desmopressin therapy, 26% (n=273/994) experienced hyponatraemia leading to hospitalisation. Patients who routinely omitted/delayed desmopressin to allow intermittent aquaresis had significantly lower risk of hyponatraemia compared to those not aware of this approach (OR 0.55; 95%-CI 0.39-0.77; p<0.01).

During hospitalisation, around 1:7 (n=71/535) did not receive desmopressin while in a ‘nil by mouth’ state without intravenous fluid replacement and reported symptoms of dehydration. In total, 64% (n=660) reported low QoL and 36% (n=369) recognised psychological changes subjectively related to their cDI, most commonly ‘heightened anxiety’.

Eighty percent (n=823) encountered a situation where cDI was confused with ‘diabetes mellitus’ by medical professionals, and 85% (n=884) supported re-naming of the condition; the most favoured being ‘vasopressin deficiency’ or ‘AVP deficiency’.

Discussion: This is the largest survey of patients with cDI, reporting high rates of treatment-related side effects, mismanagement during hospitalisation, psychological co-morbidities, and a clear desire for re-naming the condition. Our data are the first to demonstrate the value of routinely omitting/delaying desmopressin, to reduce risk of hyponatraemia.

The author has declared no conflict of interest.