Management of cranial diabetes insipidus: clinical outcomes and patient perception of care

Abstract

Objective: There is growing recognition of morbidity and mortality that can occur in patients with cranial diabetes insipidus (CDI) during hospitalisation, due to prescribing errors and dysnatraemia, often related to confusion between CDI and diabetes mellitus amongst non-specialists. Methods: Data for each hospitalisation in patients with CDI attending OUH were collected retrospectively. The same cohort were invited to complete a questionnaire by telephone. Results: 109 patients were included, median age 42 (range 6-80) years. Route of desmopressin was tablet, melt and nasal spray in 74%, 7% and 17% of patients, while two patients used a combination of oral and nasal spray. There were 85 admissions to OUH in 38 patients between 2012 and 2021. Daily measurement of serum sodium was performed in 39% of admissions; hyponatraemia and hypernatraemia occurred in 44% and 15% of admissions. Endocrine consultation was sought in 63% of admissions post-2018. 45/78 patients (58%) self-reported ≥1 admission to any hospital since diagnosis. Of these, 53% felt their medical team did not have a good understanding of the management of CDI during hospital admission. 24% reported delay in administration of desmopressin, while 44% reported confusion between CDI and diabetes mellitus, often leading to unnecessary blood glucose monitoring. Conclusion: Dysnatraemia is common in hospitalised patients with CDI. More than half of patients perceived their medical team’s understanding of CDI to be poor when admitted with intercurrent illness. A coordinated approach including early consultation of specialists, frequent serum sodium monitoring, and education of hospital specialists, is needed to address this.

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

“…4 In line with this and a study by Dilrukshi and colleagues, 24% of the hospitalised patients in our survey reported problems accessing desmopressin during routine or emergency hospitalisations, most commonly due to non-availability. 29 Owing to its rarity, central diabetes insipidus is a neglected condition among health-care professionals, and increased awareness of this disease is urgently needed. Additionally, central diabetes insipidus is often confused with diabetes mellitus.…”