Consensus group proposes new name for diabetes insipidus
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A group of representatives from national and international endocrine, nephrology and pediatric societies has proposed changing the name of diabetes insipidus to arginine vasopressin deficiency and arginine vasopressin resistance.
In an article published in Endocrine Connections, researchers said the main impetus for changing the name of diabetes insipidus was to eliminate confusion with diabetes mellitus and endorse a name that more accurately reflects the disease’s etiology. Arginine vasopressin deficiency will be used for central etiologies and arginine vasopressin resistance will be used for nephrogenic etiologies.
“The working group discussed several names, but the ones we now suggest, in our opinion, optimally reflect the underlying pathophysiology, which in the case of diabetes insipidus is well known to be deficient secretion and/or end-organ effects of the hormone arginine vasopressin,” Mirjam Christ-Crain, MD, PhD, professor of endocrinology at University Hospital Basel in Switzerland, told Healio.
Christ-Crain cited several reasons for changing the name of diabetes insipidus. The primary reason was that diabetes insipidus and diabetes mellitus are both referred to as “diabetes,” even though they are different conditions. This led to confusion for both patients and caregivers.
“This confusion with diabetes mellitus has led to bad experiences and outcomes of patients with diabetes insipidus when they are under the care of non-endocrine specialists,” Christ-Crain said. “In several patients with central diabetes insipidus, desmopressin treatment was withheld with serious adverse outcomes, even leading to death.”
Patients are supporting the name change. In a survey of more than 1,000 people with central diabetes insipidus, 85% said they preferred the name to be changed, and 87% said the name should be changed due to confusion between diabetes insipidus and diabetes mellitus.
According to the researchers, the term diabetes insipidus was first coined in 1794 to differentiate the condition from diabetes mellitus. In the late 19th century and during the 20th century, new knowledge was acquired about the underlying pathophysiology and different etiologies of diabetes insipidus. However, no attempt to rename diabetes insipidus was made during that time.
“We believe the names of medical disorders optimally should reflect the underlying pathophysiology, which in the case of diabetes insipidus is now well known to be deficient secretion and/or end-organ effects of the hormone arginine vasopressin,” the researchers wrote. “Hence, for all the above reasons, the working group proposes that the name diabetes insipidus should be changed.”
Christ-Crain said the previous term of cranial diabetes insipidus and nephrogenic diabetes insipidus will remain in use in parentheses in studies for several years, but use of the new arginine vasopressin resistance and arginine vasopressin deficiency terms will be used immediately.
“We will now begin using the terms arginine vasopressin resistance and arginine vasopressin deficiency in manuscripts and chapters and in our presentation,” Christ-Crain said. “Once the transition is complete, it is likely that the parenthetic term will be lost, albeit people can still use it if they wish. In addition, we have initiated a request to the [ICD] Coordination and Maintenance Committee to have the ICD-11 coding changed to reflect the new names.”
For more information:
Mirjam Christ-Crain, MD, PhD, can be reached at mirjam.christ-crain@usb.ch.
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