ESPE Abstracts

Background: Since the 1980s, growth hormone (GH) treatment has been administered to children as daily subcutaneous (SC) injections. GH-treatment is extremely costly, and requires a high level of training and education, otherwise there is a risk of a poor response to treatment by the patient. This can lead to a waste of time and money for the family. The key to good adherence and successful treatment is patient understanding of the growth/metabolic problem and the effect of GH. Effective personnel education is also crucial. Sweden is a large country, spanning 1572 km from north to south. Patient care is divided between six universities and a few small county hospitals. County hospitals have a limited number of patients, and due to this, they have a limited amount of experience. This means that the quality of patient care and the level of education of staff in relation to GH treatment can vary between hospitals. Despite this, longitudinal data on the impact of -standardized education in GH-treatment is lacking.

Aim: To create and implement a standardized program to be used to both educate and train personnel in the proper management of GH-treatment, as well as educate patients and their families thereby increasing their understanding and thus leading to greater adherence.

Results: The National paediatrics endocrine nursery group have initiated this project to produce “worksheets” that can be used for standardized education in GH-treatment throughout the country. The result of this is a “worksheet” which includes a flow-chart containing questions on both sides of ‘the loop’, dividing the worksheet into two parts. The first part contains fact-bubbles with questions and talking points related to evidence-based knowledge which patients and family have received education on during their visits to the paediatrics clinic. The second part contains the questions that were asked face-to-face with patients during their visits to the clinic. The backside of the “worksheet” contains facts to support the caregiver in the conversation with the patient/family. It is intended that this “worksheet” should be used continuously during any follow-up meetings at the clinic.

Conclusion: Unified training given by the endocrine nursery team from each paediatric clinic throughout the country could improve the adherence and effectiveness of GH-treatment. Implementing the proposed training materials will mean that every patient will receive the same high quality of care and high level of education regardless of where they live in Sweden.