Publications by authors named "Amanda Bettle"

Background: Clotting factor concentrates have been the mainstay of severe hemophilia treatment over the last 50 years. Differences in risk of neutralizing antibody (inhibitor) formation according to concentrate used remain clinically relevant.

Objectives: To assess inhibitor development according to type of clotting factor concentrate in previously untreated patients (PUPs) with severe hemophilia A and B.

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Children with acute lymphoblastic leukemia experience pain from the disease, treatment, and procedures. Parents can be effective in managing their child's pain, but little is systematically known about how they do this. Appreciative inquiry was used to frame the study within a strengths-based lens and interpretive descriptive methods were used to describe pain sources, parents' pain care role, and key structures supporting parents pain care involvement.

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Congenital sideroblastic anemia (CSA) is a hematological disorder characterized by the presence of ringed sideroblasts in bone marrow erythroid precursors. Mutations in the erythroid-specific glycine mitochondrial transporter gene SLC25A38 have been found in a subset of patients with transfusion-dependent congenital CSA. Further studies in a zebrafish model identified a promising ameliorative strategy with combined supplementation with glycine and folate.

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A single case study approach was used to examine the maternal experience of chronic sorrow in caring for an adolescent with a progressive neurodegenerative condition. A family systems model was used to examine maternal coping and adaptation. A diagnosis of a childhood neurodegenerative illness will inevitably result in periods of deterioration, increased physical, financial and health care needs.

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