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Quality of Life Among Children With Sickle Cell Disease Receiving Chronic Transfusion Therapy

Children’s Mercy Hospital, Kansas City, MO. phone: 816-234-3292 kstegenga{at}cmh.edu

Peggy Ward-Smith, PhD, RN

University of Missouri–Kansas City, Kansas City, MO

Pamela S. Hinds, PhD, RN, CS

St. Jude Children’s Research Hospital, Memphis, TN

Julie A. Routhieaux, MS, RN

Children’s Mercy Hospital, Kansas City, MO

Gerald M. Woods, MD

Hematology/Oncology Clinic at Children’s Mercy Hospital, Kansas City, MO

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 CTT. 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.

Key Words: sickle cell disease • chronic transfusion therapy

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