Time for change: Renaming Diabetes Insipidus to improve patient safety

Abstract

Diabetes Insipidus (DI) is a name given historically to two conditions, which result in "diabetes," which is Greek for "syphon" or polyuria.The "Insipidus" refers to urine being insipid. "Cranial DI" is so called because it relates to a cause within the head characterized by deficiency of vasopressin [antidiuretic hormone (ADH)] secretion from the posterior pituitary. Treatment is with desmopressin, a synthetic long-acting analogue of vasopressin. In contrast, "Nephrogenic DI" is due to resistance of the renal tubules to vasopressin action.The term "DI" distinguishes it from diabetes mellitus (DM), which describes polyuria with sweet urine. Over several decades, the word "diabetes" has become synonymous with "Diabetes Mellitus" in most lay and nonendocrine medical arenas.The problem of "DI" terminology is painfully illustrated by a tragic and avoidable death. In 2009, a 22-year-old man was admitted to a London teaching hospital for an elective hip replacement. He was fit and well but was pan anterior and posterior hypopituitary requiring full replacement therapy, including desmopressin, after successful treatment for a suprasellar germinoma the previous year.Treatment for the germinoma with high-dose glucocorticoid therapy had caused avascular necrosis of his hip. A pre-admission assessment had recommended that the endocrine team in the hospital be informed on his admission. On admission to the orthopaedic ward, his drug card was completed with the appropriate pituitary hormone replacement therapy including desmopressin, but the endocrine team was not informed.Although the hip operation the next day was without incident, back on the ward, he became confused. His mother told the ward staff that "he gets like this when he doesn't take his medication."The following day, he was even more confused and the ward staff found his condition challenging. A psychiatric opinion was sought as he had a history of previous marijuana use. Various options to sedate him were suggested. He was put in a sideward. At this stage, the patient himself called the police by phone and pleaded for help as "I am so thirsty and they are not giving me anything to drink." The police came to the ward, but were reassured by the ward staff and left. His blood sugar and electrolytes were taken, and although the glucose was normal, the serum sodium was 149 mmol/L. A medical review was requested but did not happen. At just after 09:00 hours, the next morning, the patient had a fatal cardiac arrest with a serum One means to avoid this catastrophe is an educational programme in all hospitals, and, where electronic prescribing systems are in place, a mandatory flag is placed for desmopressin with warnings that this is a life-sustaining therapy and must never be omitted, and supplies must be obtained immediately, or a doctor called.(We have also flagged all steroid and insulin prescriptions.)Another way to reduce the chance of failure of recognition of DI by staff and distinguish it from DM would be if the name was changed to avoid the word "diabetes." S...

Central diabetes insipidus from a patient's perspective: management, psychological co-morbidities, and renaming of the condition: results from an international web-based survey

“…4 Four of these dose omissions resulted in death due to severe dehydration. 4,28 Consequently, the NHS sent an alert to all doctors informing them of the risk of omitting this life-sustaining medication. 4 In line with this and a study by Dilrukshi and colleagues, 24% of the hospitalised patients in our survey reported problems accessing desmopressin during routine or emergency hospitalisations, most commonly due to non-availability.…”

Information about the statement of the working group on changing the name of diabetes insipidus: why it is relevant and should be supported in Ukraine

“…У неендокринологів термін «діабет», який дослівно означає «протікання води як через сифон» [1], переважно сприймається саме у контексті порушення вуглеводного обміну та потреби у цукрознижувальній терапії. Нецукровий діабет, симптомом якого також є поліурія, але який має зовсім інший патогенез та потребує іншого лікування, доволі часто сприймається неправильно саме через використання терміна «діабет» [2]. Неправильне сприйняття цього патологічного стану призводить до призначення неправильного, непотрібного лікування або, навпаки, до відміни замісної терапії, що може обумовити розвиток серйозних небажаних явищ, у тому числі невиправних.…”

“…Як наслідок, 660 (64 %; 0,61-0,67) учасників повідомили про нижчу якість життя, а 369 пацієнтів (36 %; 0,33-0,39) мали психологічні зміни, суб'єктивно пов'язані з центральним нецукровим діабетом. У декількох пацієнтів із центральним нецукровим діабетом лікування десмопресином було відмінене з серйозними побічними наслідками, включно зі смертю [2]. Це призвело до резонансних судових справ і розслідувань коронерів із залученням поліції, які широко висвітлювалися в засобах масової інформації.…”

Changing the Name of Diabetes Insipidus: A Middle Eastern Perspective

“…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…”