Adrenal Insufficiency in the United States
Presentation Number: SUN 405
Date of Presentation: April 2nd, 2017
Elizabeth Anne Regan*1 and Anand Vaidya2
1National Jewish Health, Denver, CO, 2Brigham and Women's Hospital, Harvard Medical School, Boston, MA
Background: Primary adrenal insufficiency (AI) is a frequently under-diagnosed condition that has a high risk of death when untreated. Evidence from Europe suggests that prevalence may be increasing in association with autoimmune mechanisms of disease. There have been limited reports of AI from the US. We sought information about patient-reported outcomes in diagnosis, current treatment of AI and management of adrenal crisis from a US cohort.
Methods:This was a cross-sectional study collected during 2015 – 2016 from an on-line registry of patients who self-identified as having primary adrenal insufficiency through the National Adrenal Diseases Foundation (NADF) and included 558 US adults. Subjects were selected from a group of 941 registrants based on case definition (physician diagnosis, use of appropriate medication), age>20 and US origin. Demographics, socioeconomic characteristics, associated diseases, steroid replacement strategies and patient function with replacement medication were abstracted. Patient-reported symptoms of adrenal crisis were summarized.
Results: The cohort was predominantly female (83%) with age range of 20-89 years (mean 51.6, SD 14.3). Seventy-seven percent of the cohort had some post-high school education and 75% reported an annual income greater than $50,000. More than half the patients reported difficulty with diagnosis, having an average of 3.5 physicians encounters prior to diagnosis. Before being diagnosed with AI, 46% were told that they were overly concerned about their health and 30% were advised to seek mental health counseling. Thyroid disorders were the most frequently reported associated condition (50% of subjects). More than 25% felt that their current steroid replacement regimen was inadequate for successful function. Adrenal crisis requiring an emergency room visit had occurred in > 60% of the cohort since diagnosis.
Conclusions: Diagnostic error is a problem for identifying primary adrenal insufficiency in an affluent, well-educated US cohort, raising concerns about failure to diagnose more vulnerable populations. Episodes of adrenal crisis are common. Current steroid replacement regimens, patient education and emergency response may be inadequate for safety and quality of life.
Nothing to Disclose: EAR, AV