Changing the Name of Diabetes Insipidus: A Middle Eastern Perspective

Introduction

Diabetes insipidus (DI) is a disorder characterized by excretion of large amounts of hypotonic urine. In clinical practice, the differential diagnosis comprises four entities.[1] A working group representing national and international endocrinology, nephrology, and pediatric societies has recently proposed changing the name of “diabetes insipidus.” The group released an editorial simultaneously in several international journals.[2] [3] [4] [5] [6] No representation of any of the developing regions was evident. However, since these proposals would most likely be accepted in clinical practice and scholarly communications worldwide, this commentary aims to increase global dissemination with a particular focus on the Middle East and North Africa (MENA) region since resistance to change has been demonstrated in the region.[7]

The working group reviewed the historical context, discussed the rationale for this proposed name change, and outlined the practical steps for implementing the name change. These are highlighted below with some MENA perspectives.[2] [3] [4] [5] [6]

The Historical Context

Diabetes mellitus (DM) has long been from antiquity until recent times, with continuous refining of the name as more knowledge is gained on characteristics.[8] [9] ^. The differentiation between DM and other polyuria is attributed to the Scottish physician William Cullen, who appended the Latin word “Mellitus” (sweet) to the Greek term diabetes to distinguish between these two types of polyuria. Johann Peter Frank introduced the term “diabetes insipidus” to differentiate these patients from those with DM.[10] ^. These terms persisted as valid clinical descriptions without known pathophysiology until the vasopressor and antidiuretic actions of posterior pituitary extracts were discovered in the late 19th and early 20th century. In the mid-20th century, arginine vasopressin (AVP) was synthesized and identified as the antidiuretic hormone, and the distinct central and nephrogenic etiologies of DI were recognized and characterized. Despite new knowledge of the underlying pathophysiology of the different etiologies of DI by the late 20th century, no attempts were made to rename DI according to the known causes of the disorder and advances in its clinical management.[11]

In Arabic, the main language in the MENA region, DI is correctly named in the WHO Unified Medical Dictionary and the medical texts where medicine is taught in Arabic.[12] However, other unofficial translations are confusing as the Arabic adaptation of the word diabetes itself wrongly indicates sugar (Sukkary) and DI is commonly distinguished by the word “false” or “nonsensical^.” [13] Both qualifying terms are not helpful ([Fig. 1]).

Fig. 1 Terminology of diabetes insipidus.

Reasons for Changing a Disease Name

The working group underscored that understanding disease processes is a dynamic field, with rapidly evolving concepts of pathophysiology based on emerging molecular and genetic data. Consequently, a newer understanding of the pathophysiology is one of the major reasons for renaming diseases. A second reason is based on historical discoveries that a previous eponymous name for a syndrome was inappropriately attributed to an individual who was not the first or even the most significant person involved in describing the syndrome. A third reason is the later appreciation of medically unethical behaviors of individuals with diseases eponymously named for them. However, the fourth reason for renaming diseases represents the major impetus to change the name of DI, namely, when traditional disease names lead to confusion between pathophysiologically different processes, leading to treatment errors and consequent adverse patient outcomes.[14]

The Specific Rationale for Changing the Name of Diabetes Insipidus

The group put forward multiple reasons to change the name of DI now. First and foremost, although the terms mellitus and insipidus do differentiate between the clinical characteristics of these two very different causes of polyuria and 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 DM has been to the detriment of patients with DI when they are under the care of nonendocrine specialists. Second, patients with DI strongly support changing the name to eliminate “diabetes” mainly because of experiences with insufficient understanding of the disease by health professionals who confused this disorder with DM affecting the management of their condition.[15] Finally, the names of medical disorders should reflect the underlying pathophysiology, which in the case of DI is well known to be deficient secretion and/or end-organ effects of the hormone AVP.

Implementation of the Name Change for Diabetes Insipidus

The working group proposed keeping the previous name in parentheses for several years to ease the transition in online searches and make sure the literature is clear. Therefore, in manuscripts and chapters, we will begin using the terms AVP-deficiency (cranial DI) and AVP-resistance (nephrogenic DI). Once the transition is complete, it is likely that the parenthetic term will be lost. In addition, working group will request to have the International Classification of Diseases 11th Revision (ICD 11) coding changed to reflect the new names.[2] [3] [4] [5] [6] This will be relevant to clinicians and coders practicing in countries with fully or partially electronic records, like most of the Arabian Gulf Region.

Conflict of Interest

None declared.

Author Contribution

Single Authorship.

Compliance with Ethical Principles

None.

• References

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Publication History

Article published online:
30 June 2023