Background: Giving patients information about steroid replacement is an inherent part of endocrinologists' and endocrine nurse roles. This information can be life saving and it is imperative that patients have not only understood the information correctly when it is given to them, but that they retain it and are able to act appropriately in times of stress and illness.
Method: Following a pilot study, a questionnaire was sent to 102 patients attending the endocrine clinic who are taking glucocorticoid replacement. The selected patients had diagnoses that included pituitary disease, Addison's disease and congenital adrenal hyperplasia. The age range was 21-80 years. Questions included general knowledge about adrenal function and how to adjust steroids in specific illness situations.
Results: Responses were received from 65 patients (63%)of the total approached. 31 (47%)respondents had needed emergency steroids at least once. 48 (73%) of patients carried a steroid card although only 26 (40%) had a medic alert emblem or similar. 51 patients (78%) were able to answer correctly how they would react if they developed diarrhoea and vomiting. However, 12 patients (18%) stated they would do nothing and 2 did not know. 46 patients (70%) knew to double their steroids in times of illness. 48 patients (73%) felt they had been given enough information, but of these only 2 (4%)answered all the questions correctly.
Conclusion: Patient education is a complex issue. Information often needs repeating in order to ensure clear understanding. Results suggest patients' perception of their own knowledge may be inaccurate, and some patients scored poorly despite rating themselves as having good understanding. Some patients may need more detailed input from medical and nursing staff to ensure their safety.
22 - 24 Mar 2004
British Endocrine Societies