hrp0082p2-d3-359 | Diabetes (2) | ESPE2014

The Sugarsquare Study: a Multicenter Randomized Controlled Trial Concerning a Web-based Patient Portal for Parents of a Child with Type 1 Diabetes

Boogerd Emiel , Verhaak Christianne , Kremer Jan , Prins Judith , Noordam Kees

Background: Raising a child diagnosed with type 1 diabetes can have a profound impact on parents. Having to combine the demands of the disease and treatment with every day parenting tasks can be overwhelming. Easy accessible communication with healthcare professionals was found to support parents in adequately coping with the disease and the disease self-management in everyday life, as well as peer support and tailored disease information. The Internet is regarded to be a suit...

hrp0084p3-605 | Adrenals | ESPE2015

Delayed Diagnosis of Salt Wasting Congenital Adrenal Hyperplasia, without Complications of Cortisol Deficiency: A Case Report

Pijnenburg-Kleizen Karijn , Noordam Kees , Otten Barto , Claahsen-van der Grinten Hedi

Background: In salt wasting congenital adrenal hyperplasia (SW-CAH) patients suffer from a deficiency of both cortisol and aldosterone and develop life-threatening salt wasting crises neonatally. Treatment consists of glucocorticoids, mineralocorticoids and salt supplementation. We present a case with a two years delayed diagnosis of SW-CAH.Case presentation: The patient was admitted to the hospital at the age of two weeks because of poor feeding, irrita...

hrp0084p2-196 | Adrenals | ESPE2015

The Role of the Nurse Practitioner in Optimising Care for Children with Congenital Adrenal Hyperplasia

van de Crommert Viviane , van Alfen-van der Velden Janielle , van der Linde Annelieke , Noordam Kees , Claahsen-van der Grinten Hedi

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 disea...