Endocrine Abstracts

Background: Adrenal Insufficiency (AI) is an inadequate production of cortisol hormone from the adrenal glands. The most common form is secondary AI (suppression of the hypothalamic-pituitary-adrenal axis), with a prevalence of approximately 300 cases per million. Patients with AI require lifelong corticosteroid replacement, which poses a risk of a life-threatening adrenal crisis (AC) event. AC presents with low blood pressure, hypoglycaemia and even loss of consciousness. This causes a significant burden, not just to families but also to the healthcare system. To prevent AC-related complications and even death, patients with AI need an urgent hydrocortisone 100 mg intramuscular injection. The United Kingdom (UK) Society for Endocrinology released an updated clinical guidance in 2016, including a new emergency steroid alert card. “Patient education” is also emphasised as an essential tool. However, studies showed that up to 50% of AC-related hospitalisations are preventable with effective patient self-management. However, numerous studies still report barriers to effective patient self-management during AC.

Objective: This study aimed to explore experiences of patients with adrenal insufficiency (AI) during an adrenal crisis (AC), and to identify barriers and enablers on the use of hydrocortisone injection device in self managing AC.

Methods: This is a qualitative study using 1:1 semi-structured interview. Participants were recruited through patient advisory groups (Addison’s Disease Self-help Group and the Pituitary Foundation) in the UK. Eligible participants were interviewed via Microsoft Teams online platform, transcribed verbatim and analysed using thematic analysis with NVivo software.

Results: Twelve White European females from various geographical locations in the UK, with confirmed diagnosis of secondary/tertiary AI participated. All participants possess an emergency hydrocortisone injection and report at least one AC episode per year. Only one participant successfully self-injected hydrocortisone. Participants reported self-management during AC is mainly affected by complexity of the disease. But, over time, understanding and confidence developed. Challenges with the use of hydrocortisone injection have been highlighted and compared to other modalities i.e., EpiPens and insulin pens. The current tools and training were beneficial to most participants, but some find the teaching session confusing. Concerns were also raised on healthcare professional’s lack of understanding in managing AC, especially in emergency departments. With the support available, i.e., next of kin, participants were able to manage AC at home.

Conclusion: This study highlights the need for an easier-to-prepare hydrocortisone injection device and more structured teaching provision not just for patients, but also for health care professionals.