Pediatric blood & cancer
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Pediatric blood & cancer · Jul 2014
Rare malignant pediatric tumors registered in the German Childhood Cancer Registry 2001-2010.
The German Childhood Cancer Registry (GCCR) annually registers approximately 2,000 children diagnosed with a malignant disease (completeness of registration >95%). While most pediatric cancer patients are diagnosed and treated according to standardized cooperative protocols of the German Society for Pediatric Oncology and Hematology (GPOH), patients with rare tumors are at risk of not being integrated in the network including trials and reference centers. ⋯ Though most of the GCCR-registered patients with rare malignant tumors are treated within GPOH trials, there is a considerable number of patients that have been diagnosed and treated outside the structures of the GPOH. These patients should be reported to the recently founded German Pediatric Rare Tumor Registry (STEP). Active data accrual and the development of appropriate structures will allow for better registration and improvement of medical care in these patients.
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Many principles of quality of care and patient safety are at the foundation of pediatric hematology/oncology. However, we still see too many errors, continue to have problems with communication, and the culture in many of our areas is still one of worrying about retribution when mentioning a problem. This review explores why specialists in pediatric hematology/oncology should be leaders in the field of quality and safety in healthcare.
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Pediatric blood & cancer · Jun 2014
Intravenous magnesium for pediatric sickle cell vaso-occlusive crisis: methodological issues of a randomized controlled trial.
Multiple recent Sickle Cell Disease studies have been terminated due to poor enrollment. We developed methods to overcome past barriers and utilized these to study the efficacy and safety of intravenous magnesium for vaso-occlusive crisis (VOC). We describe the methods of the Intravenous Magnesium in Sickle Vaso-occlusive Crisis (MAGiC) trial and discuss methods used to overcome past barriers. ⋯ Leveraging PECARN resources, forging close collaborations between Sickle Cell Centers and EDs of participating sites, and approaching eligible patients for prior consent helped overcome these barriers. Participation in the PECARN network and establishment of collaborative arrangements between Sickle Cell Centers and their affiliated EDs are major innovative features of the MAGiC study that allowed improved subject capture. These methods could serve as a model for future studies of VOCs.
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Pediatric blood & cancer · Jun 2014
Pain management at home in children with cancer: a daily diary study.
With the transition of care of cancer patients from the hospital to the home setting, parents are largely responsible for children's pain management. Children's cancer pain is undermanaged, yet, there is little empirical data on the occurrence and management of cancer pain in the home setting. The purpose of the present study, therefore, was to employ a daily diary protocol to examine barriers to pain management of children's cancer pain by parents at home. ⋯ A significant proportion of children receiving outpatient treatment for cancer were rated as experiencing chronic pain and pain was not optimally managed in the home setting. Further understanding and addressing barriers to children's cancer pain management in the home setting will aid in alleviating unnecessary pain in this vulnerable patient population.
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Pediatric blood & cancer · Jun 2014
VKORC1 and CYP2C9 genotypes are predictors of warfarin-related outcomes in children.
Despite substantial evidence supporting a pharmacogenetic approach to warfarin therapy in adults, evidence on the importance of genetics in warfarin therapy in children is limited, particularly for clinical outcomes. We assessed the contribution of CYP2C9/VKORC1/CYP4F2 genotypes and variation in other genes involved in vitamin K and coagulation pathways to warfarin dose and related clinical outcomes in children. ⋯ This study confirms the importance of VKORC1/CYP2C9 genotypes for warfarin dosing in a young pediatric cohort and demonstrates an impact of genetic factors on clinical outcomes in children. Furthermore, we identified an additional variant in CYP2C9 of potential relevance for warfarin dosing in children.