Implementation of a Caregiver-Focused Educational Intervention for Managing Adrenal Crisis in Patients with Duchenne Muscular Dystrophy


Clinical Management

Poster Number: 85


Mirini Kim DNP, CPNP-PC, Brigit VanGraafeiland DNP, CRNP, FAAN, Rachel Gafni MD


1. Children's National Hospital, 2. Johns Hopkins University, 3. National Institutes of Health

Purpose: The purpose of this quality improvement project was to evaluate the effect of adrenal crisis education for the caregivers of patients with Duchenne Muscular Dystrophy. The project had three arms: caregiver education, caregiver injection training, and provider education.

Methods: This project utilized a pre-post design to compare caregiver knowledge of adrenal crisis management before and after the education using a questionnaire. Injection technique was demonstrated to caregivers, and their injection competency was assessed using a checklist. Lastly, the neurology providers received a presentation on adrenal crisis management. The rate of emergency hydrocortisone prescriptions written by providers was compared pre- and post-intervention through a chart review.

Results: A total of 11 caregivers agreed to participate. There was a statistically significant median improvement in knowledge scores of 5 points (IQR 4) from pre to post-test (p <0.01). All caregivers required only one iteration to demonstrate injection competency. A total of two neurology providers participated in the training. Provider prescription rates improved from 0% (0 out of 10 patients) to 63.6% (7 out of 11 patients) following the training.

Conclusions: This project demonstrated that knowledge and competency improved for caregivers of patients with Duchenne Muscular Dystrophy after one education session. Provider prescription rates also improved with education. There is a paucity of literature regarding adrenal crisis education in Duchenne Muscular Dystrophy and further studies are needed.