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Observational Study
. 2025 Apr 22:16:1544502.
doi: 10.3389/fendo.2025.1544502. eCollection 2025.

Patient and caregiver experiences with hydrocortisone injections in adrenal crisis: a mixed-methods cross-sectional study

Sofia Llahana  1 , Julia Anthony  2 , Kyriakie Sarafoglou  3   4 , Mitchell E Geffner  5 , Richard Ross  6
Affiliations
Observational Study

Patient and caregiver experiences with hydrocortisone injections in adrenal crisis: a mixed-methods cross-sectional study

Sofia Llahana et al. Front Endocrinol (Lausanne). .

Abstract

Background: Adrenal crisis is the leading cause of death in patients with adrenal insufficiency, and prevention requires immediate parenteral hydrocortisone administration. However, most patients do not receive their home emergency hydrocortisone injection. Our study aimed to investigate barriers and enablers to using emergency hydrocortisone injections in managing adrenal crises.

Methods: This mixed-methods observational study utilized an online survey distributed through two U.S.-based patient advocacy groups. A total of 688 respondents completed the survey, including 485 (70%) parents/caregivers of individuals with adrenal insufficiency and 203 (30%) adults with adrenal insufficiency. Qualitative free-text responses were analyzed using thematic content analysis, with subsequent quantification of identified barriers and enablers to administering parenteral hydrocortisone during adrenal crises.

Results: Over 60% of patients with adrenal insufficiency had required parenteral hydrocortisone for an adrenal crisis, yet fewer than 20% managed to self-inject. Thirteen barriers and nine enablers were identified across three thematic domains: device factors, external factors, and emotional factors. Key barriers included the complexity of the multi-step hydrocortisone injection process (81%), injection-related anxiety and lack of confidence (18%), challenges accessing the correct hydrocortisone formulation or equipment (38%), and inadequate support for managing adrenal crises (29%). Key enablers included the effectiveness of hydrocortisone (14%), the convenience of the combined powder-and-diluent hydrocortisone vial (36%), and patient education (4%). Notably, 97% of participants expressed a preference for a hydrocortisone autoinjector to enhance self-injection capabilities.

Conclusion: Effective adrenal crisis management requires comprehensive, evidence-based interventions across patient, healthcare, and societal levels. This should include the development of user-friendly hydrocortisone delivery devices, individualized patient education, healthcare system reforms, and public awareness.

Keywords: adrenal crisis; adrenal insufficiency; congenital adrenal hyperplasia; hydrocortisone injection; parenteral glucocorticoid therapy; self-management.

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Conflict of interest statement

SL has received consulting and invited speaker fees from Recordati, Ipsen, and Neurocrine Pharmaceuticals. JA is Founder and Chief Strategy Officer for SOLUtion Medical which is developing injector products for adrenal crisis treatment. KS serves as a consultant for Neurocrine Biosciences, Spruce Biosciences, Crinetics Pharmaceuticals, Adrenas Therapeutics; Alexion Pharmaceuticals, Novo Nordisk and Eton Pharmaceuticals on behalf of University of Minnesota Medical School, but does not receive personal income for these activities. MG receives consulting fees from Adrenas, Aeterna Zentaris, Ascendis, Eton Pharmaceuticals, Novo Nordisk, Neurocrine Biosciences, Pfizer, Spruce Biosciences, Theratechnologies Inc., and Tolmar; and royalties from McGraw-Hill and UpToDate. RR is a consultant to Neurocrine Biosciences.

Figures

A bar and line chart illustrating the age distribution of participants with adrenal insufficiency across eight age categories. The blue bars represent participant numbers, while the orange line shows the percentage distribution. The largest group, 29.5% (203 participants), is aged 1–7 years, with declining percentages in older age groups: 17.9% (8–13 years), 12.8% (14–17 years), and 8.2% (18–24 years). Adults aged 25–34, 35–44, and 45–54 years show similar proportions at 6.6% (45), 9.6% (66), and 9.2% (63), respectively. The smallest groups are aged 55–64 years (4.8%, 33 participants) and 65 years or older (1.5%, 10 participants).
Figure 1
Age categories in children and adults with adrenal insufficiency (N = 687).
A pie chart showing the distribution of individuals administering hydrocortisone during an adrenal crisis among AIU respondents. The proportions are as follows: 19% (47) self-injected, 23% (57) were injected by a parent or guardian, 14% (35) by a family member, caregiver, partner, or significant other, and 27% (68) by a medical professional, ambulance, or ER personnel. Additionally, 4% (10) reported that the injector varied depending on the circumstances of the adrenal crisis, while 13% (31) indicated they did not receive a hydrocortisone injection. Each segment is represented by a distinct color.
Figure 2
Who injected hydrocortisone in an adrenal crisis (N = 248; AIU respondents). AIU, Adrenal Insufficiency United patient organization; AC, adrenal crisis; HDC, hydrocortisone; ER, emergency room.
A bar chart showing the circumstances reported as triggers for adrenal crises among 522 participants. Vomiting was the most common trigger, accounting for 39.5% (206 respondents), followed by unspecified illness (14.9%), gastroenteritis (14.2%), flu or flu-like illness (7.9%), and diarrhea (4.0%). Other triggers included trauma or injury (3.3%), major emotional stress (2.9%), physical exhaustion (2.7%), post-surgery or elective procedures (2.5%), and infections like urinary tract infections or pneumonia (1.9%). A significant proportion (22.2%) could not specify a trigger.
Figure 3
Precipitating circumstances that triggered adrenal crises (N = 522). AC, adrenal crisis; UTI, urinary tract infection.
A concept map illustrating three overarching domains—Device Factors, External Factors, and Emotional Factors—that influence barriers and enablers to hydrocortisone injection use during adrenal crises. Each domain branches out into multiple themes represented as individual nodes. Red nodes indicate barriers, while blue nodes indicate enablers. The diagram visually categorizes and connects the contributing factors for better understanding of their impact on hydrocortisone injection administration.
Figure 4
Domains and themes explaining barriers and enablers to hydrocortisone injection use during an adrenal crisis.
A bar chart summarizing barriers (red) and enablers (blue) to hydrocortisone injection use, reported by participants. Key barriers include usability and preparation of the injection (42%, N = 277), needing to use the injection during an adrenal crisis (19%, N = 126), and anxiety or fear associated with injections (10%, N = 69). Enablers include portability and convenience of the injection device (36%, N = 221) and effectiveness of hydrocortisone in treating adrenal crises (14%, N = 83).
Figure 5
Barriers (N = 661) and enablers (N = 612) to hydrocortisone injection use during an adrenal crisis. HDC, hydrocortisone; AC, adrenal crisis. Participants often identified multiple barriers and enablers, with individual quotes coded into one or more themes. Bar labels represent the number and percentage of respondents attributing their experiences to each specific barrier or enabler.
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