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

in European Journal of Endocrinology
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  • 1 Endocrinology and Diabetes Unit, Department of Medicine I, University Hospital Wuerzburg, Wuerzburg, Germany
  • 2 Endocrinology in Charlottenburg, Berlin, Germany
  • 3 Department of Endocrinology, Diabetes and Nutrition, Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany
  • 4 Medical practice for Endocrinology, Saarbrücken, Germany
  • 5 Division of Endocrinology and Metabolism, Rostock University Medical Center, Rostock, Germany
  • 6 Endocrinology & Diabetes Unit, Department of Internal Medicine 1, Goethe-University Hospital Frankfurt, Frankfurt/Main, Germany
  • 7 Medical Practice for Endocrinology, Lübeck, Germany
  • 8 Medizinische Klinik IV, Klinikum der Universität München, Munich, Germany
  • 9 Medical Practice for Endocrinology & Diabetes, Oldenburg, Germany

Correspondence should be addressed to S Hahner; Email: Hahner_S@ukw.de

*(S Burger-Stritt and A Eff contributed equally to this work)

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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.

Supplementary Materials

    • Supplemental table: Centre-dependent distribution of available questionnaires.
    • Supplemental figure: Content of the educational programme.

 

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