What’s In a Name? – The Move to Rename Diabetes Insipidus Gains Momentum

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There has been a movement afoot to change the name of diabetes insipidus to better reflect the condition’s underlying pathophysiology. With an agreement on a new name — “Arginine Vasopressin Deficiency or Resistance,” depending on the etiology — an international coalition hopes to eliminate any ongoing confusion for patients and their caregivers.

The name “diabetes insipidus” should be changed to help protect patients’ lives and reduce confusion about the condition, according to a joint position statement recently co-published across the multiple titles, including The Journal of Clinical Endocrinology & Metabolism.

The statement, issued by a global, cross-organizational Working Group for Renaming Diabetes Insipidus, outlines the need for a name change that reflects the underlying pathophysiology of diabetes insipidus to prevent its confusion with diabetes mellitus among non-endocrine healthcare professionals, which can have serious adverse outcomes for patients.

The authors of the editorial write that there are several reasons for changing the name of diabetes insipidus. “First and foremost,” they write, “although the terms mellitus and insipidus do differentiate between the clinical characteristics of these two very different causes of polyuria, and clearly are not eponyms, the use of the common term ‘diabetes’ in both has unfortunately led to confusion for both patients and their caretakers. This confusion with diabetes mellitus has been to the detriment of patients with diabetes insipidus when they are under the care of non-endocrine specialists.”

Patient Approved

What’s more is that patients themselves support changing the name. A recent survey published in The Lancet Diabetes & Endocrinology found that out of more than 1,000 patients with central diabetes insipidus, 85% of them preferred the name to be changed, pointing to experiences with healthcare professionals who confused the disorder with diabetes mellitus. “Eighty-seven percent of patients felt that this lack of knowledge and the resulting clinical confusion affected the management of their condition, e.g., repeated blood sugar measurements or prescription of medication for diabetes mellitus during hospitalization,” the Working Group authors write.

“The call for a name change started some years ago due to some tragic outcomes for patients but has gathered a pace over the last 12 months due to a working group of endocrinologists representing different endocrine societies around the world, and patient representatives.”

John D. C. Newell-Price, MD, PhD, FRCP, professor of medicine, Department of Oncology and Metabolism, University of Sheffield, United Kingdom

“Patients experience harm due to health care professionals confusing the two,” says John D. C. Newell-Price, MD, PhD, FRCP, a clinical researcher and professor of medicine in the Department of Oncology and Metabolism at the University of Sheffield in the United Kingdom and one of the representatives for the Endocrine Society in the Working Group. “The call for a name change started some years ago due to some tragic outcomes for patients but has gathered a pace over the last 12 months due to a working group of endocrinologists representing different endocrine societies around the world, and patient representatives.”

However, the change in the name does not mean a change in treatment protocols. “Treatment will remain the same, but patients will have a better understanding of the condition that is being treated by their physician,” according to Mihail “Misha” Zilbermint, MD, MBA, associate professor of clinical medicine at the Johns Hopkins University School of Medicine, and chief of endocrinology, diabetes, and metabolism, Suburban Hospital, Bethesda, Md. “In the past, every time a new diagnosis of diabetes insipidus was established, I would have to explain to patients why ‘this diabetes’ is different from the ‘other diabetes.’”

Worldwide Consensus

The authors write that they believe the names of medical disorders should reflect the underlying pathophysiology. Diabetes insipidus is well known to deficient secretion and/or end-organ effects of the hormone arginine vasopressin, the authors write, so the Working Group proposes that the name diabetes insipidus should be changed to “Arginine Vasopressin Deficiency (AVP-D)” for central etiologies, and “Arginine Vasopressin Resistance (AVP-R)” for nephrogenic etiologies. They note that this proposal proposal has been endorsed by the following societies represented by the working group members: Endocrine Society, European Society of Endocrinology, Pituitary Society, Society for Endocrinology, European Society for Paediatric Endocrinology, Endocrine Society of Australia, Brazilian Endocrine Society, and Japanese Endocrine Society, and is under review at several other societies.

“We are proud to be working with other societies and professional healthcare bodies across the world to make this important name change, to ‘arginine vasopressin deficiency (AVP-D)’ for central etiologies, and ‘arginine vasopressin resistance (AVP-R)’ for peripheral nephrogenic etiologies,” the Society for Endocrinology Clinical Committee said in a statement.

“One more rare condition — a transient diabetes insipidus in pregnancy caused by excessive vasopressinase activity, an enzyme expressed by placental trophoblasts, metabolizing arginine vasopressin, should also be addressed, and perhaps, renamed,” Zilbermint says.

Eliminating Confusion

In their conclusion, the Working Group authors acknowledge that a name change can be difficult to implement, but they write that rheumatologists changed Wegener’s granulomatosis to Granulomatosis with Polyangiitis and therefore hope those in the medical community recognize and accept the rationale for changing the name of diabetes insipidus, “both in the interest of scientific accuracy, but more so for the benefit and safety of our mutual patients with diabetes insipidus so that their disease and its treatment will no longer be confused with diabetes mellitus.”

“Treatment will remain the same, but patients will have a better understanding of the condition that is being treated by their physician. In the past, every time a new diagnosis of diabetes insipidus was established, I would have to explain to patients why ‘this diabetes’ is different from the ‘other diabetes’.”

Mihail “Misha” Zilbermint, MD, MBA, associate professor of clinical medicine at the Johns Hopkins University School of Medicine, and chief of endocrinology, diabetes, and metabolism, Suburban Hospital, Bethesda, Md.

The move to change the name from “diabetes insipidus’” to “Arginine Vasopressin Deficiency or Resistance” for central and nephrogenic DI, respectively, is driven by a desire to improve patient safety, Newell-Price tells Endocrine News. “In a survey of over 1,000 patients with diabetes insipidus, 85% were keen for a name change: the reason for this being the confusion that arises between ‘diabetes insipidus’ and ‘diabetes mellitus’.”

Zilbermint adds that it will take time for clinicians and patients to get used to the new nomenclature, perhaps a decade or more. “Textbooks would have to be rewritten,” he says.  “It may add some additional confusion short-term, but I see a beneficial result long-term.”

Bagley is the senior editor of Endocrine News, who wrote about the Endocrine Society’s new telehealth consensus statement in the October issue.

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