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1: J Pediatr Oncol Nurs. 2004 Jul-Aug;21(4):207-13.
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Quality of life among children with sickle cell disease receiving chronic transfusion therapy.

Stegenga KA, Ward-Smith P, Hinds PS, Routhieaux JA, Woods GM.

Children's Mercy Hospital, Hematology/Oncology Clinic, 2401 Gillham Road, Kansas City, MO 64108, USA. kstegenga@cmh.edu

Sickle cell disease (SCD) is a genetic disorder that is most prevalent among those of African American and Mediterranean descent. Hemoglobin SS is the most severe form of SCD and carries an increased risk for stroke. Although the initial treatment for stroke is an exchange transfusion, the use of routine, chronic transfusion therapy (CTT) has been shown to help prevent this neurological injury. The treatment plan is rigorous and time consuming, both of which impact one's quality of life (QoL). The purpose of this study was to explore QoL, from the child's perspective, as it is affected by CTT Semistructured interviews were performed on 10 children undergoing CIT: Five themes emerged from the data: (a) pain, (b) school issues, (c) disease knowledge, (d) transfusion therapy, and (e) having a stroke. Data from this study reveal that CTT does have an impact on QoL. This information is important to share with those making CTT treatment decisions.

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PMID: 15490865 [PubMed - indexed for MEDLINE]