Determinants of Self-Reported Health Outcomes in Adrenal Insufficiency: A Multi-Site Survey Study.

CONTEXT Current evidence on determinants of adverse health outcomes in patients with adrenal insufficiency (AI) is scarce, especially in regards to AI sub-types. OBJECTIVE To determine predictors of adverse outcomes in different sub-types of AI. DESIGN AND SETTING Cross-sectional survey study at two tertiary centers. PARTICIPANTS 696 patients with AI: primary AI (PAI, 42%), secondary AI (SAI, 32%), and glucocorticoid-induced AI (GIAI, 26%). INTERVENTION Patient-centered questionnaire. MAIN OUTCOME MEASURES Patients' knowledge, self-management of AI, self-perceived health and adverse outcomes. RESULTS The incidence rate of adrenal crisis was 24/100 patient-years with 44% experiencing at least one adrenal crisis since diagnosis (59% in PAI vs 31% in SAI vs 37% in GIAI, p<0.0001). All patients described high degrees of discomfort with self-management and receiving prompt treatment. Patients with PAI were most likely to develop adrenal crises (adjusted OR 2.8, 95% CI: 1.9-4.0) despite reporting better self-perceived health (adjusted OR 3.3, 95% CI: 2.1-5.3), understanding of their diagnosis (89% vs 74-81% in other sub-types, p=0.002), higher comfort with self-management (62% vs 52-61% in other sub-types, p=0.005), and higher likelihood to receive prompt treatment for adrenal crises in the emergency department (42% vs 19-30% in other sub-types, p<0.0001). CONCLUSIONS Patients with AI reported high degrees of discomfort with self-management and treatment delays when presenting with adrenal crises. Despite better self-perceived health and understanding of diagnosis, patients with PAI experienced the highest frequency of adrenal crises. A multi-dimensional educational effort is needed for patients and providers to improve the outcomes of all sub-types of AI.