Living with Diabetes and Why we should listen to the Patient’s Story

“Dedicated to diabetes” is more than our strap line for the Diabetes Health Profile. It reflects our mission to better understand and help support the management of the psychological and behavioral impact on the individual living with the condition and to provide methods and techniques to achieve this.

It’s both a vision and mission originating nearly 30 years ago as a young researcher I frequently observed in clinic sessions, the real but, underlying emotional issues faced by many patients on a day to day basis that extended beyond the traditional concerns of normal blood glucose levels. But, nevertheless, went more or less unidentified by clinicians mainly because standardized measurement techniques were unavailable at the time and because emphasis was placed on the clinical aspects rather than the psychological.

This was the origin of the Diabetes Health Profile. Now a ubiquitous measure of patient reported outcome (PRO) in the assessment of the emotional and behavioral aspects of diabetes and completed nationally and internationally in clinical trials and surveys by more than 10,000 people with diabetes. But, then a notion slowly being forged by listening to numerous patient stories usually at night in their homes and often told with emotion.

These patients’ stories have resulted in a series of standardised statements covering the emotional and behavioural issues that now make up the Diabetes Health Profile and which people with diabetes instantly recognise and engage with as well as provide valuable insight for the clinician and researcher.

Patient stories are an essential component to research and in particularly the development of techniques to improve patient care.

Do you have any stories about your day-to-day living with diabetes? If so we would like to hear from you by replying below.



Categories: Diabetes Health Profile, Patient reported experience

Tags: , , , , , , ,

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