Patient education and steroid replacement regimens in adrenal insufficiency

Adrenal crisis is a life-threatening emergency contributing to the excess mortality of patients with adrenal insufficiency. Studies in patients on chronic replacement therapy for adrenal insufficiency have revealed an incidence of 5–10 adrenal crises/100 patient years and suggested a mortality rate from adrenal crisis of 0.5/100 patient years. Patients with adrenal crisis typically present with profoundly impaired well-being, hypotension, nausea and vomiting, and fever responding well to parenteral hydrocortisone administration. Infections are the major precipitating causes of adrenal crisis. Lack of increased cortisol concentrations during infection enhances pro-inflammatory cytokine release and sensitivity to the toxic effects of these cytokines (e.g. tumour necrosis factor alpha). Furthermore, pro-inflammatory cytokines may impair glucocorticoid receptor function aggravating glucocorticoid deficiency. Treatment of adrenal crisis is simple and highly effective consisting of i.v. hydrocortisone (initial bolus of 100 mg followed by 200 mg over 24 h as continuous infusion) and 0.9% saline (1000 ml within the first hour). Prevention of adrenal crisis requires appropriate hydrocortisone dose adjustments to stressful medical procedures (e.g. major surgery) and other stressful events (e.g. infection). Patient education is a key for such dose adjustments but current education concepts are not sufficiently effective. Thus, improved education strategies are needed. Every patient should carry an emergency card and should be provided with an emergency kit for parenteral hydrocortisone self-administration. A hydrocortisone pen would hold a great potential to lower the current barriers to hydrocortisone self-injection. Improved patient education and measures to facilitate parenteral hydrocortisone self-administration in impending crisis are expected to significantly reduce morbidity and mortality from adrenal crisis.

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

Experimental and Clinical Endocrinology & Diabetes ◽

10.1055/a-1217-7208 ◽

2020 ◽

Author(s):

Tina Kienitz ◽

Stefanie Hahner ◽

Stephanie Burger-Stritt ◽

Marcus Quinkler

Keyword(s):

Patient Education ◽

Adrenal Insufficiency ◽

Replacement Therapy ◽

Medical Therapy ◽

Medical Personnel ◽

Daily Basis ◽

Background Information ◽

Therapeutic Patient Education ◽

Dose Adaptation ◽

Glucocorticoid Replacement Therapy

AbstractAdrenal insufficiency (AI) requires life-long treatment with glucocorticoid replacement therapy. Over- or under-substitution carries the risk of increased morbidity in the form of side effects or adrenal crises. Glucocorticoid replacement therapy needs to be flexible with dose adaptation in special situations. This could not be managed by medical personnel on a daily basis, but requires an educated patient who has a good knowledge of the disease, understands his medical therapy and is able to perform situational dose adaptation. The rarity of the disease in combination with the need to respond to stressful situations with rapid glucocorticoid dose adjustment underlines that a well-trained patient is crucial for optimal management of the disease.In this literature review we provide background information further clarifying the need of education in patients with AI including the current shortcomings of medical therapy and of the treatment of patients with AI. We outline the aims of therapeutic patient education, present the concept of structured patient education in Germany, and discuss available results of patient group education programs. Furthermore, we propose strategies how therapeutic patient education for adrenal insufficiency can be organized under COVID-19 pandemic conditions.

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Development and assessment of a low-health-literacy, pictographic adrenal insufficiency action plan

Journal of Pediatric Endocrinology and Metabolism ◽

10.1515/jpem-2021-0541 ◽

2021 ◽

Vol 0 (0) ◽

Author(s):

Patrick T. Reeves ◽

Ashley C. Packett ◽

Carolyn Sullivan Burklow ◽

Sofia Echelmeyer ◽

Noelle S. Larson

Keyword(s):

Patient Education ◽

Adrenal Insufficiency ◽

Assessment Tool ◽

Action Plan ◽

Consumer Information ◽

Care Plan ◽

Endocrine Society ◽

Readability Score ◽

Suitability Assessment ◽

Individualized Care

Abstract Objectives Adrenal insufficiency (AI) is an overall rare disorder characterized by the chronic need for pharmacotherapy to prevent threat to life. The Pediatric Endocrine Society has recommended the use of clinical action tools to improve patient education and help guide acute management of AI. We aimed to develop and assess an easy-to-use, patient-friendly, evidence-based, personalized pictogram-based adrenal insufficiency action plan (AIAP) to aid in the management of AI in children. Methods Patients/caregivers (P/Cs) responded to surveys which measured the concepts of transparency, translucency, and recall in order to assess the pictograms. Readability was assessed using six formulas to generate a composite readability score. Quality was graded by P/Cs using the Consumer Information Rating Form (CIRF) (>80% rating considered acceptable). Understandability and actionability was assessed by medical librarians using the Patient Education Materials Assessment Tool-Printable (PEMAT-P) (>80% rating was acceptable). Suitability was evaluated by clinicians using the Suitability Assessment of Materials (SAM) instrument (>70% rating considered superior). Results All pictograms met criteria for inclusion in the AIAP. Composite readability score=5.4 was consistent with a fifth-grade level. P/Cs (n=120) judged the AIAP to be of high quality with CIRF rating=85.2%. Three medical librarians rated the AIAP to have 100% understandability and 100% actionability. Thirty-three clinicians completing the SAM generated a suitability rating of 90.0%. Conclusions The AIAP visually highlights individualized care plan components to facilitate optimized preventative and acute AI care. Further investigation will determine if AIAP improves clinical outcomes for patients with AI.

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Therapeutic patient education in adrenal insufficiency

Annales d Endocrinologie ◽

10.1016/j.ando.2018.03.002 ◽

2018 ◽

Vol 79 (3) ◽

pp. 167-173 ◽

Cited By ~ 2

Author(s):

Laurence Guignat

Keyword(s):

Patient Education ◽

Adrenal Insufficiency ◽

Therapeutic Patient Education

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Standardised patient education in adrenal insufficiency: a prospective multi-centre evaluation

Acta Endocrinologica ◽

10.1530/eje-20-0181 ◽

2020 ◽

Vol 183 (2) ◽

pp. 119-127

Author(s):

Stephanie Burger-Stritt ◽

Annemarie Eff ◽

Marcus Quinkler ◽

Tina Kienitz ◽

Bettina Stamm ◽

...

Keyword(s):

Patient Education ◽

Adrenal Insufficiency ◽

Well Being ◽

Education Programme ◽

Basic Knowledge ◽

Adrenal Crisis ◽

Data Sets ◽

Subjective Well Being ◽

Multi Centre Study ◽

Repeated Training

Objective Patients with adrenal insufficiency (AI) suffer from impaired quality of life and are at risk of adrenal crisis (AC) despite established replacement therapy. Patient education is regarded an important measure for prevention of AC and improvement of AI management. A standardized education programme was elaborated for patients with chronic AI in Germany. Design Longitudinal, prospective, questionnaire-based, multi-centre study. Methods During 2-h sessions, patients (n = 526) were provided with basic knowledge on AI, equipped with emergency cards and sets and trained in self-injection of hydrocortisone. To evaluate the education programme, patients from eight certified centres completed questionnaires before, immediately after and 6–9 months after training. Results 399 completed data sets were available for analysis. Questionnaire score-values were significantly higher after patient education, indicating successful knowledge transfer (baseline: 17 ± 7.1 of a maximum score of 29; after training: 23 ± 4.2; P < 0.001), and remained stable over 6–9 months. Female sex, younger age and primary cause of AI were associated with higher baseline scores; after education, age, cause of AI and previous adrenal crisis had a significant main effect on scores. 91% of patients would dare performing self-injection after training, compared to 68% at baseline. An improvement of subjective well-being through participation in the education programme was indicated by 95% of the patients 6–9 months after participation. Conclusion Patient group education in chronic AI represents a helpful tool for the guidance of patients, their self-assurance and their knowledge on prevention of adrenal crises. Repeated training and adaptation to specific needs, for example, of older patients is needed.

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