Quality of Life of Children With Sickle Cell Disease Who Are Getting Chronic Transfusions With a Lifeport
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This study is being done to see what impact having a Lifeport device has on quality of life for children with sickle cell who are getting chronic transfusions, from the child's perspective.
Condition or disease
Anemia, Sickle Cell
There is a paucity of research that focuses specifically on quality of life (QoL) among patients with sickle cell. This study aims to explore the QoL of children who are receiving chronic transfusion therapy (CTT) using a Lifeport device, which allows them to undergo erythrocytapheresis, rather than standard transfusion therapy. Erythrocytapheresis is less time consuming and is associated with less iron overload than conventional transfusion therapy; however, little is known about the implications for the child's QoL. This study will explore QoL from the child's perspective.
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Layout table for eligibility information
Ages Eligible for Study:
8 Years to 18 Years (Child, Adult)
Sexes Eligible for Study:
Accepts Healthy Volunteers:
Individuals with a diagnosis of sickle cell disease between the ages of 8 & 18 years
currently receiving chronic transfusion therapy via a Lifeport device
Individuals have been utilizing the Lifeport for at least 6 months and no more than 18 months
Individuals have received transfusions previously using conventional transfusion therapy (simple or exchange transfusions)
Individuals have permission of parents (when applicable) and assent
Individuals who, in the opinion of the study staff, would suffer negative consequence, psychosocial trauma, or undue stress as a result of participation