User-Centered Design- Quality Improvement in Adrenal Insufficiency Edmonton

Primary adrenal insufficiency (PAI), also known as Addison's disease, is a rare hormonal disorder affecting 1 to 2 people per 100 000. The major cause of PAI in developed countries is due to autoimmune disease. Infections such as tuberculosis, trauma to the adrenal glands, or cancer of the adrenal glands can also cause PAI.

Our Division collected some preliminary data using an informal online survey, which showed that out of 15 endocrinologists who responded, only 64% provided written instructions for stress dosing of medication. We would like to explore how our Division can improve the quality of adrenal insufficiency education by collaborating with people living with PAI to create a shared toolkit and measure its impact on patient visits from both endocrinologist and patient viewpoints, and preventable hospitalizations for PAI as measured by emergency room visits for the adrenal crisis.

Indra Budiyanto
Designer Edmonton, Canada