Quality of Life of Children With Sickle Cell Disease Who Are Getting Chronic Transfusions With a Lifeport

Children's Mercy Hospital Kansas City

Status: Completed

Conditions: Anemia, Sickle Cell

Study type: Observational

Funder types: Other

Identifiers

NCT00246077

CMH 05 07-098E

Details and patient eligibility

About

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.

Full description

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.

Sex: All

Ages: 8 to 18 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• 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

Exclusion criteria

• Individuals who, in the opinion of the study staff, would suffer negative consequence, psychosocial trauma, or undue stress as a result of participation