Replacement therapy with cortisone – patient education, acceptance and wishes

We surveyed patients under replacement therapy with cortisone by a self-reporting questionnaire either as a hardcopy or via an internet-based data entry form. Participants of the study were recruited via an article in „Glandula“, the journal of the German self-help group of patients with pituitary and adrenal diseases („Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.“). 338 patients answered the questionnaire. Two-thirds completed the written form and one-third the online form in the internet. 42% of the participants suffered from hypopituitarism, 30% from Addison's disease and 28% from adrenogenital syndrome. 25% of the patients reported about hospitalisations due to Addison crisis. 70% of the patients got an individualized course of counselling concerning cortisone replacement therapy straight after diagnosis, 30% got counseling with a latency (median 4, mean 32 months). Only 32% of the patients felt to be well informed after the first counselling, which took 32 minutes on the average. However, no significant difference of hospitalisation frequency could be found between well and less well informed patients. The majority of all patients (92%) were advised in further talks. Patients gathered additional information mostly from „Glandula“, flyers, internet and self-help groups meetings.

Only 2% had furthermone asked an endocrinologist's advice on their own initiative. When asked which further training methods would be preferred, 65% desired detailed written instructions. 60% would prefer training in the self-help group and half of the patients would use a computer-based or web-based training. Only 4% of the patients held that no additional training was necessary.

Conclusion: The majority of the patients are discontent with the present, typically unstructured forms of counselling concerning cortisone replacement therapy. Although counselling by a physician is indispensable, our data suggest a further need for detailed written instructions to be conveyed either within groups or web-based interactive platforms.