Reinforcing Education for Adrenal Insufficiency Self-Management Improves Patient Outcomes

Reinforcing Education for Adrenal Insufficiency Self-Management Improves Patient Outcomes 150 150 Lauren Dembeck

Patients with adrenal insufficiency (AI) receiving daily maintenance corticosteroid replacement therapy may develop signs and symptoms of AI when encountered with physical stress events, such as fever, infection, pain from injury or surgery. Patient education on stress dosing of hydrocortisone at the time of illness or injury is essential to prevent adrenal crisis, a life-threatening complication that may occur if AI is not properly managed.

At Nationwide Children’s Hospital, patients and their families receive comprehensive education at the time of diagnosis, but knowledge retention had not been formally evaluated. In 2017, pediatric endocrinologist Sasigarn Bowden, MD, along with three pediatric endocrinology fellows — Nisha Patel, MD, Ryan Heksch, MD, and Michael Thompson, MD, PhD — and Cindy Young, RN, a pediatric endocrine nurse at Nationwide Children’s, led a quality improvement (QI) initiative to assess patient/family knowledge on AI.

“We started with administering knowledge and skill quizzes to patients and caregivers during clinical follow up visits. We also assessed the utility of medical identification (MedID: bracelet or necklace) among patients over 2 years of age and found that only 39% of the patients had MedID and only 10% wore it. This made us realize that much more work needed to be done here.” says Dr. Bowden, who is also a professor of Clinical Pediatrics at The Ohio State University College of Medicine.

“Through these quizzes, we were able to evaluate gaps in knowledge among patients and caregivers. Addressing these gaps can greatly improve patient education and outcomes” says Dr. Patel.

Knowledge deficits among patients and/or caregivers were identified in key areas such as signs and symptoms of AI, the amount and frequency of stress dose, and situations when stress dosing is needed. The team then established a patient and caregiver re-education process with an active-learning approach. This led to the creation of the Adrenal Insufficiency Action Plan, an easy-to-use tool that families can reference for appropriate dosing based on their clinical situation. Medical ID bracelets for AI were also provided to patients.

Following the re-education process and the creation and implementation of the Adrenal Insufficiency Action Plan, AI knowledge and MedID use among patients improved. The QI team, including Don Buckingham MBOE, CPHQ, lead coordinator of Quality Improvement Services at Nationwide Children’s, further evaluated the impact of this improved knowledge on real life situation by evaluating emergency department (ED) visits of patients with AI.

Preliminary findings based on the most recent analyses in February 2020 demonstrated clear reductions in the number of ED visits (per 1000 patients) by AI patients and increased percentage of appropriate stress dosing in those patients who had ED visits. These preliminary findings provide evidence that AI education can improve patient self-care and resource utilization and highlight the positive impact of ongoing education, which needs to be reinforced at follow up clinic visits to help improve patient outcomes.



Patel N, Heksch R, Thompson M, Young C, Bowden S. Knowledge of adrenal crisis prevention and utility of medical identification in patients with adrenal insufficiency: a quality improvement initiative. Hormone Research in Pediatrics. 2020;93 (suppl 1) Jun 1:97.

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About the author

Lauren Dembeck, PhD, is a freelance science and medical writer based in New York City. She completed her BS in biology and BA in foreign languages at West Virginia University. Dr. Dembeck studied the genetic basis of natural variation in complex traits for her doctorate in genetics at North Carolina State University. She then conducted postdoctoral research on the formation and regulation of neuronal circuits at the Okinawa Institute of Science and Technology in Japan.