Patients with adrenal insufficiency (AI) require life-long glucocorticoid (GC) replacement treatment and dose adjustment in stress situations to prevent life-threatening adrenal crises. Herein this study we evaluated the patients' healthcare situation and their knowledge on AI, comparing various aspects to a prior survey in 209 physicians. Using a questionnaire, we conducted a comprehensive survey among 33 AI patients who were treated at the endocrine outpatient clinics of two University Hospitals in Germany. The majority of AI patients (97%) named their treating physician as main source for information. Overall, 89.7% of interviewees were satisfied with their medical treatment; however, about 1/3 reported controversies with healthcare professionals regarding GC replacement in various situation. Two thirds of AI patients increased their substitution dose temporarily within the last 12 months. However, not all patients had an emergency ID, and only 64.5% an emergency kit. None of the interviewed patients identified the need for adjustment in all given situations correctly. Almost 80% of patients did not correctly identify all symptoms of GC over- and under-replacement. Interestingly, we found no significant differences between patients and physicians regarding specific aspects of GC replacement. We showed that: (i) AI patients have some knowledge gaps on modalities and adequacy of GC replacement therapy; (ii) long-term management of patients with AI remains a challenge requiring an experienced specialist; and (iii) further education of physicians as primary source of information is necessary. Additional education may help AI patients to empower them to adequate self-treatment.

Adrenal insufficiency (AI) is a rare disease with an estimated prevalence of less than 300 per million [ [1] Ekman B. Fitts D. Marelli C. Murray R.D. Quinkler M. Zelissen P.M. European Adrenal Insufficiency Registry (EU-AIR): a comparative observational study of glucocorticoid replacement therapy. BMC Endocrine Disorder. 2014; 14: 40 Crossref Scopus (23) Google Scholar ]. AI can either be the result of destruction of the adrenal glands (primary AI), or of dysfunction of the pituitary gland or the hypothalamus (secondary/tertiary AI). Glucocorticoid (GC) replacement as treatment in AI is intended not only to completely restore well-being in affected patients, but also to prevent life-threatening complications. As such, adrenal crisis occurs with an incidence of 5–10 patients per 100 patient years and is associated with a mortality of 0.5% [ [2] Allolio B. Extensive expertise in endocrinology: adrenal crisis. Eur J Endocrinol. 2015; 172: R115-R124 Crossref PubMed Scopus (152) Google Scholar ]. A major cause for adrenal crisis is failure to timely increase GC replacement dosage in patients undergoing stressful episodes (e.g. infections, surgery) [ [3] Hahner S. Loeffler M. Bleicken B. Drechsler C. Milovanovic D. Fassnacht M. et al. Epidemiology of adrenal crisis in chronic adrenal insufficiency: the need for new prevention strategies. Eur J Endocrinol. 2010; 162: 597-602 Crossref PubMed Scopus (234) Google Scholar ]. Thus, patient education is essential to help affected individuals preventing acute impairment of their disorder [ [4] Bancos I. Hahner S. Tomlinson J. Arlt W. Diagnosis and management of adrenal insufficiency. Lancet Diabetes Endocrinol. 2015; 3: 216-226 Abstract Full Text Full Text PDF PubMed Scopus (217) Google Scholar ]. Previous findings suggest that the treating physicians are still the patients' main source to obtain information on AI [ [5] Harsch I.A. Schuller A. Hahn E.G. Hensen J. Cortisone replacement therapy in endocrine disorders—quality of self-care. J Eval Clin Pract. 2010; 16: 492-498 Google Scholar ]. However, there is evidence that there is a need to improve physicians' performance in this particular field.

Patients with adrenal insufficiency (AI) require continuous glucocorticoid (GC) replacement treatment to restore well-being and to prevent life-threatening complications. Knowledge of symptoms of inadequate replacement and on therapeutic options is of utmost importance to provide best medical care. We previously demonstrated significant differences between physicians working at Hospitals with and without a Division of Endocrinology when asked about knowledge of clinical signs and treatment of AI [ [1] Kampmeyer D. Lehnert H. Mönig H. Haas C.S. Harbeck B. A strong need for improving the education of physicians on glucocorticoid replacement treatment in adrenal insufficiency: an interdisciplinary and multicentre evaluation. Eur J Intern Med. 2016; ([Epub ahead of print]) Google Scholar ]. Therefore we assumed that physicians, who have more frequently contact with AI patients, are better informed and that personal experience might have a major impact on management of AI patients.