Endocrine Abstracts

JOINT835

Background: Adrenal insufficiency (AI) is a severe condition that requires lifelong substitution with cortisone and/or mineralocorticoid. A good initial education to AI patients/families is the key to understand the severity of disease, for better compliance and management of critical situations throughout life. Pediatric care in Northern Sweden is offered at five county level hospitals and at university hospital level therefore AI care and education may vary due to experiences of the staff and number of patients. In 2019 the worksheet was implemented to ensure high-quality care and information regardless of the clinic´s experience or geographic location.

Aim: To evaluate use of the worksheet in pediatric clinics in Northern Sweden regarding the management of patients suffering from AI. To study the patient’s and their familýs understanding of the disease and management of cortisone substitution under different conditions.

Result: In 2019 the Swedish endocrine nurse group presented a worksheet for patient education in pediatric clinics throughout the country. This contains questions with evidence-based knowledge, and from real-life situations/activities discussed with patients/family during follow-up at pediatrics care. For evaluation, we sent a questionary to six pediatric clinics and to forty patients with AI in Northern Sweden. Questionnaire for medical staff included questions about knowledge of worksheet, use in clinical practice and how to develop this educational material to be used more. Answers from clinicians showed: 100% found educational material useful and were satisfied with the content, but only 85% used it in daily practice. Two clinics (15%,) don´tt use the material due to low amounts of AI patients and medical resources. All clinicians suggested continuous training in the use of the worksheet. Questionary to the patients/families included questions like knowledge about your disease, managing of critical situations and suggestion for improvement of education. Answers from thirty-seven patients showed great satisfaction with education and wishes to continue as we do now. Patients from clinics that didn`t use the worksheet were educated from the university hospital.

Conclusion: Standardization of education by using the worksheet in all children’s clinic in Northen Sweden increase the quality of patients’ education. Patients receive equal education regardless of the clinic’s experience or geographical location. The evaluation in Northern Sweden showed needs for caregivers continuous training in the use of the worksheet.