ABSTRACT
PURPOSE: To identify variations in practices used by nurses for pediatric patients with sickle cell disease (SCD) receiving chronic blood transfusion therapy for strokes. DATA SOURCES: Descriptive study of a convenience sample of 11 nurses who care for children with SCD from nine institutions completed a closed-ended questionnaire consisting of 37 items. Responses reflected practice experience with a total of 189 transfused patients with SCD. CONCLUSIONS: A wide range of nursing practices exists for blood transfusion therapy for children with SCD and strokes. Manual partial exchange transfusion (66%) was the most commonly used method for blood transfusion in children with strokes reported among the nurses surveyed. Simple transfusions and erythrocytapheresis account for 21% and 13% of the practices reported. Opportunities exist to establish evidence-based nursing care guidelines to improve the care of children with strokes receiving blood transfusion therapy. IMPLICATIONS FOR PRACTICE: A wide range of local standard care guidelines for blood transfusion therapy exists. The results of this survey indicate that partial manual exchange transfusion is the most commonly used method of chronic blood transfusion therapy in children with SCD and stroke despite the fact that the magnitude of benefit in comparison with simple transfusion has not been established. Factors such as peripheral venous access, compliance with current chelation regimen, and the presence of antibodies are important considerations in the choice of method.
Subject(s)
Anemia, Sickle Cell/complications , Blood Transfusion , Stroke , Attitude of Health Personnel , Blood Transfusion/methods , Blood Transfusion/nursing , Blood Transfusion/standards , Child , Chronic Disease , Cytapheresis/methods , Evidence-Based Medicine , Exchange Transfusion, Whole Blood/methods , Health Services Needs and Demand , Humans , Long-Term Care , Nurse Practitioners/organization & administration , Nurse Practitioners/psychology , Nursing Evaluation Research , Nursing Methodology Research , Nursing Staff, Hospital/organization & administration , Nursing Staff, Hospital/psychology , Pediatric Nursing/organization & administration , Practice Guidelines as Topic , Stroke/etiology , Stroke/therapy , Surveys and Questionnaires , Time Factors , Total Quality Management , Transfusion Reaction , WashingtonABSTRACT
Sickle cell disease is a genetic disorder with an autosomal recessive pattern of inheritance. This disease is most prevalent among those of African American and Mediterranean descent. Cerebral vascular accident (CVA) or stroke is one of the major complications of hemoglobin SS (Hgb SS) disease. CVA has implications for physical as well as neurocognitive function for children. Recent literature suggests that some children with sickle cell disease without overt signs of CVA may still have evidence of neurological deficit, both on magnetic resonance imaging and neurological examination. There is a growing body of knowledge that further aids in delineation of risk factors for CVA, silent infarct, and neurocognitive deficits in children with Hgb SS disease. More research is needed to continue to explore avenues for identification and intervention. The purpose of this article is to delineate areas of ongoing research in this important area.
Subject(s)
Anemia, Sickle Cell/psychology , Cognition Disorders/epidemiology , Cognition , Nervous System Diseases/epidemiology , Stroke/epidemiology , Anemia, Sickle Cell/complications , Anemia, Sickle Cell/physiopathology , Child , Female , Humans , Male , Myocardial Infarction/epidemiologyABSTRACT
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.
