Aims: To discover the views of patients with Diabetes Insipidus (DI) on difficulties they encounter with managing DI in different circumstances; the possible causes of these difficulties and how these might be improved for their safety.
Background: Between 2009 and 2015 there were 471 serious adverse inpatient incidents and 2 deaths involving DDAVP administration1. The analysis of one death resulted in a suggestion that the name of the condition was a contributory factor2.
Method: At the National Pituitary Foundation patients conference in April 2019, a questionnaire entitled Living with Diabetes Insipidus was distributed to any DI patients who requested it.
Results: 22 completed questionnaires from patients with DI were returned. Mean age was 54 years (1773). Mean duration of DI was 35.7 (269). The majority (59.1%) considered the worst situation for them was in hospital casualty or as an inpatient. 90.9% thought the main difficulty was confusion with Diabetes Mellitus (DM). 100% thought a name change would help them. The most popular choice of a new name was Pituitary Insipidus (PI) 16/22 (72.7%). Negative comments were made against the other choices. An emergency card and improved staff education were also voted for. There were no votes for leaving the current situation unchanged.
Conclusions: Patients primary wish is to rename DI with PI to improve their safety. There are 2 reasons for this name change: 1. It takes away the word Diabetes which continues to cause confusion and deaths. 2. By including the word Pituitary it will link the patient to the endocrine team for advice. Also Insipidus remains for harmonising publications. Names of conditions have been changed in other specialities. The process of the change to PI which conforms to WHO (World Health Organisation) recommendations will be proposed.
2. Prentice M, Clin Endocrinol (Oxf). 2018;00:12.