Alaina P Vidmar1, Jonathan F Weber1, Roshanak Monzavi1,2, Christina M Koppin1, Mimi S Kim1,2,3. 1. Center for Endocrinology, Diabetes and Metabolism, Children's Hospital Los Angeles, Los Angeles, CA, USA. 2. Keck School of Medicine of University of Southern California, Los Angeles, CA, USA. 3. The Saban Research Institute at Children's Hospital Los Angeles, Los Angeles, CA, USA.
Abstract
BACKGROUND: Classical congenital adrenal hyperplasia (CAH) is a potentially life-threatening condition, and adrenal crisis is a major cause of morbidity and mortality in affected children. Medical-alert identification (ID) could prevent complications of adrenal crisis by identifying the need for time-sensitive, critical treatment. Our objectives were to evaluate usage of medical-alert IDs by CAH youth, ownership and awareness of IDs amongst their parents, and the effect of an in-clinic educational intervention on ID utilization. METHODS: Fifty families of youth with classical CAH secondary to 21-hydroxylase deficiency (11.2±5.0 years old, 58% female) were prospectively studied. An in-clinic needs assessment survey was administered at baseline to parents, paired with an educational intervention, and a follow-up needs assessment phone survey 1 month post-intervention. A quality improvement (QI) framework was utilized with plan-do-study-act (PDSA) process-improvement cycles. RESULTS: At baseline, 20/50 (40%) CAH families owned a medical-alert ID, of which only 10/20 (50%) of ID owners reported usage >3 days per week. Only 26/50 (52%) parents were aware of ID options. Post-intervention, ID ownership doubled to 39/50 (78%; p<0.05), usage amongst ID owners reached 100% (39/39), and awareness increased to 42/50 (84%; p<0.05). A surprising barrier reported by five Spanish-speaking families was the inability to order medical-alert IDs online. CONCLUSIONS: Only a small percentage of CAH youth frequently wear a medical-alert ID, but utilization can be effectively improved with an in-clinic educational intervention. Further study is merited to assess a potential reduction in morbidity and mortality of adrenal crisis with increased medical-alert ID utilization.
BACKGROUND: Classical congenital adrenal hyperplasia (CAH) is a potentially life-threatening condition, and adrenal crisis is a major cause of morbidity and mortality in affected children. Medical-alert identification (ID) could prevent complications of adrenal crisis by identifying the need for time-sensitive, critical treatment. Our objectives were to evaluate usage of medical-alert IDs by CAH youth, ownership and awareness of IDs amongst their parents, and the effect of an in-clinic educational intervention on ID utilization. METHODS: Fifty families of youth with classical CAH secondary to 21-hydroxylase deficiency (11.2±5.0 years old, 58% female) were prospectively studied. An in-clinic needs assessment survey was administered at baseline to parents, paired with an educational intervention, and a follow-up needs assessment phone survey 1 month post-intervention. A quality improvement (QI) framework was utilized with plan-do-study-act (PDSA) process-improvement cycles. RESULTS: At baseline, 20/50 (40%) CAH families owned a medical-alert ID, of which only 10/20 (50%) of ID owners reported usage >3 days per week. Only 26/50 (52%) parents were aware of ID options. Post-intervention, ID ownership doubled to 39/50 (78%; p<0.05), usage amongst ID owners reached 100% (39/39), and awareness increased to 42/50 (84%; p<0.05). A surprising barrier reported by five Spanish-speaking families was the inability to order medical-alert IDs online. CONCLUSIONS: Only a small percentage of CAH youth frequently wear a medical-alert ID, but utilization can be effectively improved with an in-clinic educational intervention. Further study is merited to assess a potential reduction in morbidity and mortality of adrenal crisis with increased medical-alert ID utilization.
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