National German Audit of Diagnosis, Treatment, and Teaching in Secondary Adrenal Insufficiency

Abstract

Great heterogeneity seems to exist regarding diagnosis, therapy, and teaching of patients with secondary adrenal insufficiency (SAI) across Germany resulting in different diagnosis and treatment strategies. The aim of the work was to present the first national audit on diagnosis, treatment, and patient teaching of SAI reflecting common clinical practice in Germany. A self-designed questionnaire was sent via e-mail to all members of the German Endocrine Society (approx. 120 centers). Returned questionnaires (response rate 38.3%) were checked for duplicity of institutions and analyzed. Diagnostic testing focuses on those patients with relevant risk for adrenal insufficiency. Basal serum cortisol is mostly used as screening test. Short synacthen and CRH tests are the preferred confirmatory tests, however, cut-off values vary due to different assays used. Patients with radiation, second surgery, progressive disease or new symptoms are followed by serial re-testing. Perioperative management and frequency of postoperative re-evaluations differ among centers. Hydrocortisone is the preferred glucocorticoid for replacement therapy, but daily doses vary considerably (10–30 mg/day). Some centers perform hormone measurements for dose adjustment of glucocorticoid replacement therapy whereas others rely on clinical judgement. Patients’ teaching is done in 84% of centers, but only half of the centers include patients’ relatives. Homogeneity exists in patients’ teaching regarding intercurrent illnesses (fever, diarrhoea). Recommendations regarding dose adaptations in situations such as sport-activities, dental-procedures, or coughing are highly variable. This first national audit reveals great heterogeneity among German centers and could improve patients’ care in SAI, for example, by initiating new trials and developing clinical practice guidelines.

Therapeutic Patient Education for Adrenal Insufficiency under COVID-19 Pandemic Conditions

“…73 % of the German endocrine centers hand out the emergency card of the German patients' self-help network (Netzwerk für Hypophysen-und Nebennierenerkrankungen e.V. ), whereas 16 % use emergency cards distributed from 4 different pharmaceutical companies, and 6 % use self-made emergency cards [35]. These different national cards reduce the recognition value among emergency personnel and might lead to disbelief and ignorance among emergency staff regarding the patient's underlying illness.…”

“…10 % reported that they had never increased their glucocorticoid dose [18]. The German national audit regarding SAI patients revealed that only 61 % of the centers prescribe additional hydrocortisone tablets, only 59 % prescribed prednisone/ prednisolone suppositories, 65 % a 100 mg hydrocortisone ampoule, 2 % a 50 mg prednisolone ampoule, 4 % hydrocortisone suppositories, and 5 % betamethasone liquid [35]. Patients are not educated well enough for emergency situations.…”

“…Only a few patients were able to or knew how to self-inject, and most of them relied on medical personnel for emergency glucocorticoid replacement treatment [17]. In the German national audit 84 % of the centers answered that they perform patient education, which was mostly done on an unstructured basis and took place during the short consulting time (average appointment time 5-15 min) [35]. Furthermore, in 47.8 % of the centers patient education is done by the doctor, in 28.8 % of the centers by the doctor's assistant, in 14.5 % by a trained endocrine nurse, in 7.4 % of the centers by a nurse or study nurse, and in 2.5 % of centers by a diabetes nurse.…”

“…Furthermore, in 47.8 % of the centers patient education is done by the doctor, in 28.8 % of the centers by the doctor's assistant, in 14.5 % by a trained endocrine nurse, in 7.4 % of the centers by a nurse or study nurse, and in 2.5 % of centers by a diabetes nurse. Relatives are involved in patient education only in 52 % of the centers [35]. Recent data from a prospective study showed that patients who performed a self-injection had an improved outcome: after initial parenteral (intramuscular or subcutaneous) glucocorticoid administration by patients or their relatives, significantly more patients were treated on an outpatient basis (62 %) compared to patients who did not self-inject (27 %), (p = 0.008) [37].…”

“…The content of patient education is very heterogenous among centers. Among German endocrine centers there is a broad agreement on advices given to patients regarding behavior in conditions, such as diarrhea, fever of 38.5 °C and light fever (flu) [35]. However, recommendations and patient education varied considerably regarding situations involving psychological stress, 60 min sport activity, common cold (without fever), coughing (without fever), or dental treatment [35].…”