Improved medical-alert ID ownership and utilization in youth with congenital adrenal hyperplasia following a parent educational intervention.

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 educati

SUBMITTER: Vidmar AP 

PROVIDER: S-EPMC7140978 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature