Background: Congenital Adrenal Hyperplasia (CAH) is a rare group of congenital adrenal diseases with an estimated prevalence of about ten newly diagnosed patients in the Netherlands per year. Morbidity and mortality improved significantly in the last 20 years mainly due to improvement of multidisciplinary care and education of patients and parents. In the last years the role of the nurse practitioner (NP) as case manager in the care and follow up of patients with chronic diseases became more clear and is frequently described.
Presentation: In our centre we provide outpatient care within the Radboud Adrenal Centre for about 90 children and 100 adults with CAH. The care for children and adolescents with CAH consists of frequent personal contact and follow up, medication control/ check-up and education of patients, parents andother care providers. The provided care is multidisciplinary and includes a team of medical specialists i.e. pediatric endocrinologist, pediatric urologist, gynecologist and clinical psychologist, all experienced in the field of physical and mental development of children with CAH. Easy accessibility for questions is a key factor to improve the care and reduce complications for these children. To improve our multidisciplinary care, we added a NP to our CAH team in 2012. The NP currently functions as case manager, coordinating the whole process of care and collaborates within the multidisciplinary team. Main tasks are: Organisation multidisciplinary outpatient clinic; training and education to prevent addison crisis; easy accessibility for parents, children and other care providers; providing information for school; coordinating transitional care; attention for quality of life by using annual questionnaires; contact with patient support group.
Conclusion: We believe that the NP plays a key-role in improving care of children with CAH within a multidisciplinary team.
01 - 03 Oct 2015
European Society for Paediatric Endocrinology