15 September 2022
For the first time, a large-scale, international patient survey provides important insights into diagnosis and treatment, as well as treatment-related side effects and psychological comorbidities of this rare neuroendocrine disease.
Background and aim of the study
Diabetes insipidus is a rare neuroendocrinological disorder resulting from a deficiency of the anti-diuretic hormone vasopressin (AVP/ADH) and is clinically characterised by polyuria and polydipsia. Research to date has been limited to studies with small numbers of patients and case reports.
The research group of Mirjam Chirst-Crain, Clinical Neuroendocrinology, at the University Hospital Basel is the leading research center for diabetes insipidus worldwide. The group has conducted so far the largest studies within this patient population. Over the years, many reports of patients have accumulated about treatment-related side effects, psychological comorbidities despite adequate treatment with desmopressin (ADH receptor agonist), and treatment failures. Mismanagement during hospitalisation, for example, due to confusion with «diabetes mellitus» or the unavailability of desmopressin can have tragic consequences.
To address these issues, the team aimed to assess patients perspectives regarding their disease management, psychological comorbidities, knowledge and awareness of the disease among health-care professionals, and renaming central diabetes insipidus. For this purpose, an online survey was developed by a team of experts in collaboration with patient representatives. The direct involvement of patients allowed a strong focus on investigating patient-relevant outcomes.
Results
Recruitment for participation in the survey was done through various channels with the support of patient organisations. In total, over 1000 individuals affected by diabetes insipidus worldwide participated in the survey. With a prevalence of approximately 1 in 25'000, to date, this is the largest study of its kind.
Atila C, Loughrey PB, Garrahy A, Winzeler B, Refardt J, Gildroy P, Hamza M, Pal A, Verbalis JG, Thompson CJ, Hemkens LG, Hunter SJ, Sherlock M, Levy MJ, Karavitaki N, Newell-Price J, Wass JAH, Christ-Crain M.
Lancet Diabetes Endocrinol. 2022 Aug 22:S2213-8587(22)00219-4.
doi: 10.1016/S2213-8587(22)00219-4. Epub ahead of print. PMID: 36007536.
Important patient-relevant findings include:
Relevance for clinical practice