Diagnosis, treatment and management of central diabetes insipidus

Male patient In consultation with doctor in office, photo by Monkey Business Images/Adobe Stock

Monkey Business Images/Adobe Stock

What is the issue?

Central Diabetes Insipidus (CDI) is a rare condition, affecting 1 in 25,000 people, which impacts patients’ quality of life. It occurs if the body is unable to produce vasopressin hormone (also known as antidiuretic hormone) in the brain, resulting in extreme thirst and excessive urination. This can occur for a number of reasons, including traumatic injury to the brain, such as from a brain tumour or surgery, or as a genetic condition, particularly in children. Excessive urination, including during the night (nocturia) can severely impact on patient wellbeing and quality of life.

Patients with CDI are also at risk of a condition called hyponatremia which occurs as a result of excessive thirst and drinking and subsequent reductions in the salt levels in their blood. Some patients cannot regulate their thirst mechanism (i.e. do not realise they are thirsty) and this can risk dehydration and overly high salt levels in the blood. CDI patients are treated with a synthetic form of vasopressin, called desmopressin, and in many cases will need lifelong treatment and management.

How are we helping?

RAND Europe was commissioned by Ferring Pharmaceuticals to conduct a project looking at care pathways for patients with CDI. The research focuses on identifying the factors that influence the diagnosis, treatment and management of patients with CDI and areas to consider in efforts to improve the quality of care that patients receive, and patient outcomes.

The research team will conduct a literature review to better understand how patients with CDI are diagnosed, treated, monitored and managed; what the challenges to treating these patients are and where there is scope for improvement in the quality of care they receive. This will be complemented with stakeholder interviews and two workshops, to dig deeper into some of the issues identified in the literature and further explore opportunities for improvement. The research will consider different key factors that may influence the diagnosis, treatment and management of patients with CDI, including exploring how COVID-19 might have impacted delivery of care.

The work is important as it will identify various factors which influence the diagnosis, treatment and management of patients with CDI. It will highlight some areas of opportunity for policymakers, clinicians and patient associations to take action to improve the extent to which healthcare systems can effectively manage these patients.