Rare Disease Report

New Device Helps Addison Disease Patients Access Life-Saving Treatment

JULY 02, 2018
Krista Rossi
Addison disease patients now have a way to get quick and easy access to potentially life-saving treatment thanks to a newly developed device using a Quick Response (QR) code, which can be carried at all times and scanned to access vital medical support.

The innovative device comes in the form of a bracelet, which has a printed QR code on a plastic card. With the use of a smartphone, the device syncs to the Addison's Disease Information System (ADIS), which provides comprehensive clinical management advice specific to the patient. Conveniently, QR codes are also free; they can be easily generated and printed with the use of free web-based software.  

In addition, QR codes allow patients in a serious condition to receive better emergency care by granting a health care provider with immediate access to treatment protocols, as noted in a study published in BMJ Innovations that included experts from the Queen Elizabeth Hospital in Gateshead. Information provided by the device includes emergency treatment the patient may need, a letter from a medical consultant, and advice regarding preparation for surgery.

Lead author of the study and senior lecturer at the Institute of Cellular Medicine, Newcastle University, Jolanta Weaver, PhD, FRCP CTHLE, discussed the new ADIS technology in a recent comment: "Rare medical conditions are prone to poor management in non-specialist units as, by definition, their presentation is uncommon. Some health care professionals do not feel they have the appropriate knowledge or confidence to manage these cases and they may need more support from information systems such as ADIS.”

The system provides access to clinical management advice for each patient, which could assist in the prevention of unnecessary deaths linked with the disease, she added.

Adrenal crisis occurs when the body fails to produce an appropriate amount of the stress hormone, cortisol. When hydrocortisone injections are not administered immediately, death can occur. With the assistance of this device, however, researchers hope to prevent these unnecessary deaths.

For the study, 54 health care providers—doctors, nurses, paramedics and dentists—were given questionnaires to fill out pertaining to the care of and confidence in managing adrenal crises. The researchers found that 37% of health care providers claimed to never have even witnessed an adrenal crisis, while 59% reported to have never managed one, signaling the need for clinical management information. As such, the researchers noted that participants also communicated a preference for QR code-linked information; in fact, as many as 96% of those who took part in the study felt that the ADIS would be helpful in an acute setting.

"The QR-code will give me confidence to know that professional health care staff, or anybody else using the ADIS, will be given access to medical information on adrenal crisis immediately so that I am given appropriate care,” Pauline Copeland, the first Addison disease patient to receive a QR-code bracelet linking her to ADIS, stressed in a recent statement.
 

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