Delayed Diagnosis of Adrenal Insufficiency Is Common: A Cross-Sectional Study in 216 Patients

Bleicken, Benjamin; Hahner, Stefanie; Ventz, Manfred; Quinkler, Marcus

doi:10.1097/maj.0b013e3181db6b7a

Cited by 180 publications

(145 citation statements)

References 25 publications

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“…The impact of AI on affected patients is high and impairment of quality of life is a frequent observation [17][18][19]. Our data confirm that physicians are still the main source of information for AI patients [10], despite the widespread availability of professional and semi-professional sources in the internet era.…”

Section: Discussionsupporting

confidence: 66%

Self-management in adrenal insufficiency — towards a better understanding

et al. 2017

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CORTISOL is an essential stress hormone produced by the adrenal glands and tightly regulated via the hypothalamic-pituitary-adrenal axis. Cortisol deficiency is a rare, but life-threatening condition, requiring immediate diagnosis and treatment. The most common cause of primary adrenal insufficiency (AI) is an autoimmune process [1], but also infections, tissue infiltration, drugs or surgery may lead to insufficient production of glucocorticoids (GC) in the adrenal glands [2]. Secondary and tertiary AI are most often due to a pituitary adenoma or traumatic injury [3].Regardless of the aetiology, patients with cortisol deficiency need an individual substitution treatment plan, which has to be adjusted in stressful situations. Abstract. 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. Self-management in adrenal insufficiency

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Section: Discussionsupporting

confidence: 66%

Self-management in adrenal insufficiency — towards a better understanding

et al. 2017

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“…Actually, the awareness is still insufficient. Two recent studies have shown a delay of diagnosis (11,12). As medical treatment of AD has not changed over decades, we assume that there is no change in life expectancy beyond that of the general population.…”

Section: European Journal Of Endocrinologymentioning

confidence: 99%

Increasing prevalence of Addison's disease in German females: health insurance data 2008–2012

Meyer

Neumann

Badenhoop

et al. 2014

European Journal of Endocrinology

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Objective: Our objective was to investigate the epidemiology of autoimmune Addison's disease (AD) in Germany. Design: Routine data were analyzed from the Statutory Health Insurance (SHI) database of the Techniker Krankenkasse (TK) for an observation period from 01/01/2008 to 31/12/2012. The TK is one of the largest German health care insurance providers covering more than 10% of the German population. Subjects and methods: Between 2008 and 2012, a total of 2477 diagnoses of primary adrenal failure were recorded in the SHI database. After exclusion of secondary, iatrogenic or other non-idiopathic forms and after adjustment for incomplete data sets, 1364 diagnoses of autoimmune-mediated AD remained. Results: The prevalence of AD in our cohort showed a steady increase from 82 per million in 2008 to 87 per million in 2012. On average, the prevalence rose about 1.8% per year, and due to a pronounced increase (2.7%) in females. The prevalence was lower in men (63-68 per million) than in women (96-108 per million). Autoimmune comorbidities were found in 46.5% of AD patients. Adrenal crises were documented with a frequency of 14-17/100 patient years. Conclusions: These data provide a first epidemiological profile of this rare and perilous endocrine disease in Germany. Although the prevalence of AD appears lower than in the Scandinavian countries, the increasing figures in females over the last 5 years warrant further investigations. Furthermore, adrenal crises pose a considerable burden. Hereby, we can show that health insurance data provide a valuable tool for epidemiological studies in the absence of national registries.

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“…12 This highlights the popular adage, ' if you think of adrenal failure: exclude it' . The diagnostic difficulty lies in the fact that cortisol secretion has a circadian rhythm, so the timing of sampling affects the result and as a 'stress hormone', cortisol secretion depends upon the health state of the patient (eg well and ambulant versus critically ill).…”

Section: Investigating Adrenal Insufficiencymentioning

confidence: 99%

Adrenal insufficiency – recognition and management

Pazderska

Pearce

2017

Clinical Medicine

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Adrenal insuffi ciency is characterised by inadequate glucocorticoid production owing to destruction of the adrenal cortex or lack of adrenocorticotropic hormone stimulation. In primary adrenal insuffi ciency, lack of mineralocorticoids is also a feature. Patients can present with an insidious onset of symptoms, or acutely in adrenal crisis, which requires prompt recognition and treatment. Chronic glucocorticoid therapy is the most common cause of adrenal insuffi ciency. The diagnosis of adrenal insuffi ciency is made by demonstrating low basal and/or stimulated serum cortisol and should be followed by appropriate investigations to establish the underlying aetiology. Maintenance glucocorticoid replacement is usually given as a twice or thrice daily hydrocortisone preparation. Patients with primary adrenal insuffi ciency also require mineralocorticoid. Regular monitoring for features of underand over-replacement is essential during follow-up. Patient education is a key feature of management of this condition. IntroductionThe adrenal cortex secretes the essential steroid hormones, cortisol and aldosterone, under the control of pituitary adrenocorticotropic hormone (ACTH), angiotensin II and plasma potassium. The most frequent cause of adrenal insufficiency is exogenous steroid use. Up to 2.5% of the population are taking such steroid medications for inflammatory or immune-mediated conditions. 1 These individuals are vulnerable to steroid deficiency if the medication is stopped suddenly. ACTH deficiency (secondary adrenal insufficiency) as a result of pituitary tumours, infiltrative diseases, head injury or congenital hypopituitarism is the next most frequent cause, present in around 1 per 3,000 individuals. 2High dose opiates, which frequently induce hypogonadotropic hypogonadism, are also increasingly recognised as a cause of hypothalamic-pituitary-adrenal (HPA) suppression.3 By comparison, primary adrenal insufficiency is rare, with a prevalence of 1 in 8,000 people. 4 In developed nations, an autoimmune attack directed against the adrenal steroidogenic enzymes (predominantly 21-hydroxylase) 5 accounts for about 85% of cases. Around 60% of patients with autoimmune ABSTRACT Adrenal insuffi ciency -recognition and managementAddison's disease have an additional autoimmune condition, most frequently autoimmune thyroid disease or type 1 diabetes.

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Delayed Diagnosis of Adrenal Insufficiency Is Common: A Cross-Sectional Study in 216 Patients

Cited by 180 publications

References 25 publications

Self-management in adrenal insufficiency — towards a better understanding

Self-management in adrenal insufficiency — towards a better understanding

Increasing prevalence of Addison's disease in German females: health insurance data 2008–2012

Adrenal insufficiency – recognition and management

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Delayed Diagnosis of Adrenal Insufficiency Is Common: A Cross-Sectional Study in 216 Patients

Cited by 180 publications

References 25 publications

Self-management in adrenal insufficiency &mdash; towards a better understanding

Self-management in adrenal insufficiency &mdash; towards a better understanding

Increasing prevalence of Addison's disease in German females: health insurance data 2008–2012

Adrenal insufficiency – recognition and management

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Self-management in adrenal insufficiency — towards a better understanding

Self-management in adrenal insufficiency — towards a better understanding