Central diabetes insipidus from a patients’ perspective: management, psychological co-morbidities and re-naming of the condition
C. Atila*a (Dr), PB. Loughreyb (Dr), A. Garrahyc (Dr), B. Winzelera (Dr), J. Refardta (Dr), M. Hamzad (Dr), A. Palc (Dr), JG. Verbalise (Prof), CJ. Thompsonf (Prof), SJ. Hunterb (Prof), M. Sherlockf (Prof), MJ. Levyd (Prof), N. Karavitakig (Prof), J. Newell-Priceh (Prof), J. Wassc (Prof), M. Christ-Craina (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
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.