Objective: Some endocrine disorders make cortisone replacement therapy (CRT) mandatory. Patients need to be well informed about the therapy and to be able to adapt the dose in case of stress, trauma or surgery. It is unknown where the patients mainly get their information from and what their preferences in learning about the disease are, as well as what their ideas are on how to improve the knowledge transfer.
Study design: We used an anonymized questionnaire to evaluate these objectives as well as the patients' present state of knowledge.
Patients and methods: A total of 338 patients with Addison's disease, hypopituitarism or adrenogenital syndrome (mean age 39.8 +/- 21.1 years, mean duration of disease 11.4 +/- 10.8 years) took part in the study.
Results: Spoken information by doctors is the main source of information for the patients (89%). Apart from counselling by physicians, journals of self-help groups (66%), brochures/guidebooks (60%) and the Internet (45%) are important sources of information. Asked for suggestions for further improvement of knowledge transfer, information available on paper is still the first choice (65%). 51.9% of the questions about CRT were answered correctly. 24% of the patients reported hospitalizations because of Addisonian crisis.
Conclusion: Information transfer by doctors is the main source of information for the patients. The low patient numbers make the development of structured education programmes unlikely. Given that only the half of the answers in the 'knowledge' section of the questionnaire were correct, the available media could contribute to the improvement of information transfer.