Intravenous prostacyclin for pulmonary hypertension: Patient's perspective on complications

Introduction: Intravenous (IV) prostacyclin therapy in patients with severe pulmonary arterial hypertension can be associated with life-threatening complications. Patient education and confidence in local healthcare services is critical to ensuring prompt treatment of such complications. We evaluated patient9s understanding of potential complications and their attitudes towards local healthcare services. Methods: Patients established on IV prostacyclin therapy were identified. Patients were counselled prior to receiving IV prostacyclin and subsequently completed a questionnaire assessing their level of understanding. Results: Ten patients were identified and agreed to participate; median distance from home to their specialist centre was 35 miles. All patients agreed or strongly agreed that they were confident in managing their pump. 8 patients reported not being aware of how long it was safe to keep their pump disconnected. 3 patients were not aware of the correct course of action to take in the event of pump failure and 3 patients did not know their correct dose. Only 3 patients felt confident in their local emergency department being able to manage any complications. Conclusions: Patients seem to require additional education. Strategies to ensure prompt recognition of complications and enhance patient confidence with local healthcare is necessary. We present a patient information card, which may assist achieving these goals. .