Abstract
Background: Primary pulmonary hypertension is a rare, debilitating disease with a poor prognosis and few treatment options. Long term intravenous epoprostenol is used in adults but there is limited experience in paediatric patients. Aim: To describe the program for the administration of epoprostenol for children and adolescents at the Royal Children's Hospital. Method: A protocol for assessment, treatment, education and monitoring of patients was developed by the cardiology and pharmacy departments. Epoprostenol is given through a central venous line via a portable infusion pump with a 100 mL medication cassette. Infusions are commenced in Intensive Care and training is provided in a cardiac ward. Regular outpatient review and dosage increments are required. Results: Home infusions of epoprostenol have been established in three patients. Conclusion: Long term epoprostenol treatment is complex and expensive. Beraprost, an orally active prostacyclin analogue, may be an alternative therapy in some patients with less severe disease. (author abstract)
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