Journal of pediatric hematology/oncology
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J. Pediatr. Hematol. Oncol. · Nov 2012
Successful use of eculizumab in a pediatric patient treated for paroxysmal nocturnal hemoglobinuria.
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, debilitating life-threatening clonal hematopoietic stem cell disease. The clinical manifestations of PNH are usually seen in adulthood and are very rarely reported in children. Eculizumab, a humanized monoclonal antibody targeting and preventing cleavage of the terminal complement protein C5, has become the "gold standard" of treatment for hemolysis or significant disease-related complications in patients with PNH. Although eculizumab is not licensed for use in pediatrics, we report a young PNH patient with bone marrow failure and severe episodes of hemolytic anemia who was treated successfully with eculizumab for >18 months.
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J. Pediatr. Hematol. Oncol. · Aug 2012
Parent-controlled PCA for pain management in pediatric oncology: is it safe?
Patient-controlled analgesia offers safe and effective pain control for children who can self-administer medication. Some children may not be candidates for patient-controlled analgesia (PCA) unless a proxy can administer doses. The safety of proxy-administered PCA has been studied, but the safety of parent-administered PCA in children with cancer has not been reported. ⋯ The mean patient age was lower in the clinician-proxy (9.4 y) and parent-proxy (5.1 y) groups, respectively. The complication rate was lowest in the parent-proxy group (0.62%). We found that proxy administration of PCA by authorized parents is as safe as clinician administered and standard PCA at our pediatric institution.
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J. Pediatr. Hematol. Oncol. · Aug 2012
Multicenter StudyDemands and rewards associated with working in pediatric oncology: a qualitative study of Canadian health care providers.
Despite recent advances in the outcome of children with cancer, the demands on medical professionals caring for these patients can be intense. Our qualitative study explored the work-related demands and rewards experienced by Canadian pediatric oncology staff. ⋯ Our study identifies important demands and rewards associated with working in pediatric oncology. Future research could explore the relationship between work-related stress and job satisfaction and how these factors either cause or prevent burnout syndrome.
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J. Pediatr. Hematol. Oncol. · Jul 2012
Single-session biofeedback-assisted relaxation training in children with sickle cell disease.
Sickle cell disease (SCD) pain remains difficult to manage. This pilot study evaluated single-session biofeedback-assisted relaxation training (BART) for SCD pain in children. Ten participants (mean = 12.1 y) completed a 1-hour BART session using thermal biofeedback and home practice. ⋯ Reductions in patient-reported pain frequency were found after completing BART. Health-related quality of life and pain-related disability improvements were observed; however, effect sizes were small to minimal. Single-session BART may be a promising, complementary approach to medical management of pediatric SCD pain.
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J. Pediatr. Hematol. Oncol. · Jul 2012
Usability testing of a Smartphone for accessing a web-based e-diary for self-monitoring of pain and symptoms in sickle cell disease.
We examined the usability of smartphones for accessing a web-based e-Diary for self-monitoring symptoms in children and adolescents with sickle cell disease (SCD). One group of participants (n = 10; mean age, 13.1 ± 2.4 y; 5 M; 5 F) responded to questions using precompleted paper-based measures. A second group (n = 21; mean age, 13.4 ± 2.4 y; 10 M; 11 F) responded based on pain and symptoms they experienced over the previous 12 hours. ⋯ Overall, sleep was good (8.1 ± 1.4 on the 0 to 10 scale). In conclusion, children with SCD were able to use smartphones to access a web-based e-Diary for reporting pain and symptoms. Smartphones may improve self-reporting of symptoms and communication between patients and their health care providers, who may consequently be able to improve pain and symptom management in children and adolescents with SCD in a timely manner.