Patients with adrenal insufficiency not only lack steroid hormones but often also a correct diagnosis, a new study from the United States suggests.
By Elizabeth Regan
Adrenal insufficiency is a life-threatening condition where patients lack the appropriate hormones produced by the adrenal gland to regulate stress responses and day-to-day function. Affected people frequently experience symptoms from low blood pressure, low blood sugar, low energy as well as muscle problems. Untreated, the disorder can lead to adrenal crisis and even death.
A new study based on data from the National Adrenal Diseases Foundation (NADF) patient registry, has now found that this serious chronic illness is probably underdiagnosed and inadequately treated for many patients in the United States. Similar results have been identified in Europe, but this is the first large study from the US. Although adrenal insufficiency is considered a rare disease, estimates are that 50,000 – 100,000 Americans may be affected.
“Overly concerned” patients?
Researchers studied patient-reported data of 541 subjects with primary adrenal insufficiency (also known as Addison’s Disease). Of those, 57% reported difficulty in getting a diagnosis to explain their symptoms. Almost half of the patients in the registry reported being told that they did not have a physical problem and that they were overly concerned about their health. More than 20% of the patients were told to seek mental health care when they actually had an undiagnosed serious physical illness. About a quarter of the subjects found that even with hormone treatments they still could not function well.
The authors suggest that problems with diagnosis may stem in part from differences between how patients commonly describe their symptoms and what doctors have been taught to expect. Most of the subjects in the registry were relatively well educated and affluent, and in spite of those factors, still had trouble getting the problem diagnosed. This raises concerns about whether less advantaged patients are able to persevere and get treatment.
Read the original article here:
Elizabeth A. Regan, Anand Vaidya, Paul L. Margulies, Barry J. Make, Katherine E. Lowe, James D. Crapo: Primary Adrenal Insufficiency in United States, Diagnostic Error and Patient Satisfaction with Treatment, 29.06.2019.