Central diabetes insipidus from a patients′ perspective - from management to psychological co-morbidities and re-naming of the condition

Atila, Cihan; Loughrey, Paul Benjamin; Garrahy, Aoife; Winzeler, Bettina; Refardt, Julie; Gildroy, Patricia; Pal, Aparna; Hamza, Malak; Thompson, Chris; Verbalis, Joseph G.; Hunter, Steven; Sherlock, Mark; J, Levy Miles; Karavitaki, Niki; Newell‐Price, John; Wass, John

doi:10.1530/endoabs.81.p253

Cited by 4 publications

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“…Subsequent to these unfortunate but avoidable cases, national safety alerts, surveys among endocrinologists, and a global task-force consisting of a wide range of senior clinicians involved with the care of patients with diabetes insipidus has led to a strong impetus to change the name of the condition. Second, patients with diabetes insipidus strongly support changing the name to eliminate “diabetes.” In a survey of > 1000 patients with central diabetes insipidus recently published in The Lancet Diabetes & Endocrinology ( 10 ), 85% preferred the name to be changed, mainly because of experiences with insufficient understanding of the disease by health professionals who confused this disorder with diabetes mellitus. Indeed, 87% percent of patients felt that this lack of knowledge and the resulting clinical confusion affected the management of their condition, eg, repeated blood sugar measurements or prescription of medication for diabetes mellitus during hospitalization.…”

Section: Rationale For Changing the Name Of Diabetes Insipidusmentioning

confidence: 99%

Changing the Name of Diabetes Insipidus: A Position Statement of the Working Group for Renaming Diabetes Insipidus

Arima

Cheetham

Cooper³

et al. 2022

The Journal of Clinical Endocrinology &Amp; Metabolism

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Section: Rationale For Changing the Name Of Diabetes Insipidusmentioning

confidence: 99%

Changing the Name of Diabetes Insipidus: A Position Statement of the Working Group for Renaming Diabetes Insipidus

Arima

Cheetham

Cooper³

et al. 2022

The Journal of Clinical Endocrinology &Amp; Metabolism

View full text Add to dashboard Cite

show abstract

“…Second, patients with diabetes insipidus strongly support changing the name to eliminate "diabetes". In a survey of >1,000 patients with central diabetes insipidus recently published in The Lancet Diabetes & Endocrinology (10), 85% preferred the name to be changed, mainly because of experiences with insufficient understanding of the disease by health professionals who confused this 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.…”

Section: Rationale For Changing the Name Of Diabetes Insipidusmentioning

confidence: 99%

Changing the name of diabetes insipidus: a position statement of the working group to consider renaming diabetes insipidus

Arima¹,

Cheetham²,

Cooper³

et al. 2022

Archives of Endocrinology and Metabolism

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What's in a name? That which we call a rose / By any other name would smell as sweet" (Juliet, from Romeo and Juliet by William Shakespeare). Shakespeare's implication is that a name is nothing but a word and it therefore represents a convention with no intrinsic meaning. Whilst this may be relevant to romantic literature, disease names do have real meanings, and consequences, in medicine. Hence, there must be a very good rational for changing the name of a disease that has a centuries-old historical context. A working group of representatives from national and international endocrinology and endocrine pediatric societies now proposes changing the name of "diabetes insipidus" to "Arginine Vasopressin Deficiency (AVP-D)" for central etiologies, and "Arginine Vasopressin Resistance (AVP-R)" for nephrogenic etiologies This editorial provides both the historical context and the rational for this proposed name change. REASONS FOR CHANGING A DISEASE NAMEUnderstanding of disease processes is a dynamic field, with rapidly evolving concepts of pathophysiology based on emerging molecular and genetic data. Consequently, newer understanding of pathophysiology is one of the major reasons for renaming diseases. In endocrinology, appreciation of hyperprolactinemia as the common pathophysiology underlying many different clinical situations causing galactorrhea and amenorrhea led to the effective abandonment of many previous eponymous names for these conditions such as Chiari-Frommel syndrome, Forbes-Albright syndrome, Ahumada-del Castillo syndrome, etc. (1). A second reason is based on historical discoveries that a previous eponymous name for a syndrome was inappropriately

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“…Second, patients with diabetes insipidus strongly support changing the name to eliminate "diabetes." In a survey of >1,000 patients with central diabetes insipidus recently published in The Lancet Dia-Horm Res Paediatr 2023;96:423-425 DOI: 10.1159/000527139 betes & Endocrinology [10], 85% preferred the name to be changed, mainly because of experiences with insufficient understanding of the disease by health professionals who confused this 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.…”

Section: Rationale For Changing the Name Of Diabetes Insipidusmentioning

confidence: 99%

Changing the Name of Diabetes Insipidus: A Position Statement of the Working Group to Consider Renaming Diabetes Insipidus

Arima¹,

Cheetham²,

Cooper³

et al. 2022

Horm Res Paediatr

Self Cite

View full text Add to dashboard Cite

Central diabetes insipidus from a patients′ perspective - from management to psychological co-morbidities and re-naming of the condition

Cited by 4 publications

References 0 publications

Changing the Name of Diabetes Insipidus: A Position Statement of the Working Group for Renaming Diabetes Insipidus

Changing the Name of Diabetes Insipidus: A Position Statement of the Working Group for Renaming Diabetes Insipidus

Changing the name of diabetes insipidus: a position statement of the working group to consider renaming diabetes insipidus

Changing the Name of Diabetes Insipidus: A Position Statement of the Working Group to Consider Renaming Diabetes Insipidus

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