LBMON62 Central Diabetes Insipidus From A Patients’ Perspective- From Management To Psychological Co-morbidities And Re-naming Of The Condition

Abstract Background Central diabetes insipidus (cDI) is a rare neuroendocrine condition characterized by deficiency of arginine vasopressin. Data about treatment-related side effects, psychological co-morbidities, and incidence of wrong management due to confusion with diabetes mellitus (DM) are scarce and limited to small studies. Furthermore, increasing interest has arisen on a potential need for re-naming the condition. Methods Web-based anonymous survey, developed by a team of endocrinologists and patient representatives covering issues from management of the condition and quality of life to lack of awareness amongst medical professionals. Patients were provided with the link to the online survey either via their physician during routine check-ups or the homepages of the UK Pituitary Foundation, Pituitary World News, Facebook group 'Got Diabetes Insipidus?', and Pituitary Society. Findings: In total, 1034 patients with cDI, 47%(n=488) with isolated posterior and 53%(n=546) with combined anterior/posterior pituitary dysfunction, participated. Median [IQR] age was 42[32, 53]. Duration of cDI was 9. 0[3. 0, 19. 0] years and its aetiologies were idiopathic 30%(n=315), tumors/cysts (pre-surgical 21%(n=217), post-surgical 25%(n=254)), inflammatory/autoimmune 6%(n=61), infiltrative diseases 6%(n=62), genetic 4%(n=44), head trauma 3%(n=34), and other causes 5%(n=47). Ninety-six percent (n=994) were on desmopressin therapy - oral tablets 56%(n=575), nasal spray 23%(n=233), and sublingual tablets 12%(n=126). Among these, 26%(n=273) experienced hyponatremia at least once whilst on desmopressin. Patients who routinely omitted desmopressin to allow aquaresis had a significantly lower risk of hyponatremia compared to those not aware of this approach (OR 0.63; 95%-CI 0.42-0.92; p<0. 018). Sixty-four percent (n=660) reported low quality of life with 6[4-7] out of 10 points on a visual analogue scale. Thirty-six percent (n=369, equally prevalent in isolated posterior and combined pituitary dysfunction) experienced psychological problems after the diagnosis, of whom 70%(n=258) reported higher anxiety levels, 71%(n=263) sleep disturbances, and 65%(n=239) depressed mood. Eighty percent (n=823) encountered a situation where medical professionals, friends or family members confused the diagnosis with DM, of these, 88%(n=637) indicated that this confusion affected the management of their cDI. In total, 85% (n= 884) would prefer a re-naming of the condition; amongst those, the most common suggestion was 'vasopressin deficiency'. Interpretation: This is the so far largest survey conducted in patients with cDI using a web-based method and patient involvement in the survey development. We show a high percentage of treatment-related side effects, high prevalence of psychological co-morbidities and clear need for re-naming the condition from patients’ perspective. Presentation: Monday, June 13, 2022 12:30 p.m. - 2:30 p.m.