ESPE Abstracts

Background: Adrenal insufficiency is a severe condition, which occurs for numerous different reasons. Diseases often require a period or even a lifelong treatment of cortisone and/or mineralocorticoid. Ensuring that families of patients who suffer from adrenal insufficiency have a high level of understanding and knowledge of the disease from the outset is key to them comprehending the severity of the disease, which in turn increases the chances of good compliance to treatments throughout the life of the patient. Incomplete knowledge and education of the disease could lead to the patient’s life being at risk in certain situations such as Infections, trauma, etc. Patient care in Sweden de-centralised and divided between University and county hospitals. The county hospitals have a limited amount of patient, as well as a limited amount of experienced staff. The quality of patient care and the level of patient’s education could vary between hospitals. Longitudinal data on the impact of standardized education in adrenal insufficiency is lacking.

Aim: An attempt to standardize the national quality of education for children and their families in understanding the disease of adrenal insufficiency and managing cortisone treatments in different conditions.

Result: The work was initiated by the national nursery group in paediatric endocrinology. They worked out a “worksheet” to be used for the education of patients in all paediatric clinics throughout the country. The worksheet contains questions on two sides of a loop. The upper part has evidence-based knowledge given to patients and families during their first visit to the children’s clinic. The other part contains the questions that were asked face to face with patients during their follow up. The backside of the “worksheet” contains facts to support the caregiver in the conversation with the patient/family. The “worksheet” should be used continuously during any follow-up meetings at the clinic.

Conclusion: Standardizing the education using the “worksheet” in all clinics across the entire country, will lead to an increase in the quality of patient care and mean that every patient will receive the same education regardless of the level of experience and training of the staff at the clinic they are visiting.