Creating an emergency card for patients living with adrenal insuffieciency

Adrenal insufficiency is a rare, life threatening-condition that occurs when your body fails produce enough cortisol and aldosterone. Adrenal insufficiency is often misdiagnosed and inappropriately treated.

Endocrinologists approached our team with the belief that care could be improved by better educating patients living with adrenal insufficiency. To understand this issue, we organized a co-design session with endocrinologists and patients to discuss patients’ knowledge of their disease and their experiences living with the condition. This session provided valuable insights into both sides of the healthcare experience. It highlighted gaps in patient knowledge, the causes and nature of patient crises, and the challenges patients face within the healthcare system.

The co-design session benefited patients by giving them a voice and the opportunity to collabortively create solutions to address their needs and fears. The ongoing open dialogue allowed both parties to discuss concerns and potential solutions collaboratively.

As a result of our discussions, we decided that an adrenal insufficiency emergency card was necessary for patients presenting to the emergency department in need of immediate treatment. Triage nurses often did not recognize adrenal insufficiency, leading to suboptimal care. The emergency card provides nurses with all the information needed to understand and act during an adrenal crisis. It also reassures patients, knowing their life-threatening condition will be promptly recognized and treated with urgency.