Endocrine Abstracts

Background: Patients with AI and their caregivers face significant challenges during adrenal crises, particularly with hydrocortisone injections often requiring up to 20 steps to administer, which impedes effective self-treatment.

Aim: To explore the perceptions and experiences of patients with AI and their caregivers regarding the administration of hydrocortisone injections during an adrenal crisis.

Methods: Participants were recruited through two USA-based patient advocacy groups: Adrenal Insufficiency United (AIU) and the CARES Foundation. An online survey, incorporating both quantitative and qualitative questions, was administered to gather data on demographic information and specific challenges encountered with the hydrocortisone injection process. Free-text comments were analysed using content thematic analysis to generate themes, which were quantitatively analysed using SPSS descriptive statistics.

Results: The survey included 688 participants, mainly parents of children with adrenal insufficiency (62.7%), with a mean patient age of 20.8 years (SD=18.0), and 29.5% of patients being under 7 years of age. Most hydrocortisone injections were administered by healthcare professionals or parents. Vomiting was the primary trigger for adrenal crises. Fifteen themes, categorized into Device Factors, External Factors, and Emotional Factors, explain the barriers and enablers of administering hydrocortisone during an adrenal crisis. The most prevalent barrier was the complexity of the injection process (n = 277; 44%), while the most helpful factor was the portability and convenience of the all-in-one powder and solution Act-o-Vial preparation (n = 221; 38%). Other key factors included the effectiveness of the hydrocortisone injection in treating adrenal crisis, the need for assistance to inject, and anxiety related to injections.

Conclusion: This study underscores the necessity for a simpler injection device to enhance patient self-confidence and self-administration ability. Heightened awareness among healthcare professionals and the public regarding adrenal crisis is imperative for timely management and prevention of avoidable hospital admissions.