Objectives: To assess the quality of self-care in patients receiving replacement therapy with hydrocortisone for primary or secondary adrenal insufficiency.
Design: A questionnaire-based survey.
Setting: The outpatient Clinic of Endocrinology at the University Hospital in Herlev, Denmark.
Subjects: Ninety-seven patients identified from the case reports of the clinic. All patients had received repeated oral information about hydrocortisone treatment and dose adjustments. Eighty-four (87%) patients completed the questionnaire.
Main outcome measures: Ability to act appropriately in case of physical stress, possession of a 'Steroid warning card', number and nature of episodes of physical stress during the past year and self-experienced level of information was recorded.
Results: Thirty-nine (46%) of the patients were not sufficiently skilled in coping with physical stress. This was more prominent in the elderly patients. Seventeen (20%) did not possess a 'steroid warning card'. Thirty-seven (44%) had experienced at least one febrile episode and 24 (29%) had been admitted to hospital during the past year. Fifty (60%) felt themselves to be well informed, but this did not correlate with the ability to act appropriately.
Conclusions: The study shows the need for continuous education of patients with adrenal insufficiency. Oral instructions should be supplemented with written information or a more detailed and structured education.