Pediatric blood & cancer
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Pediatric blood & cancer · Apr 2015
Comparative StudyDigital storytelling: an innovative legacy-making intervention for children with cancer.
This study examined the feasibility of a legacy-making intervention in children with cancer and the preliminary effects on outcomes related to quality of life. ⋯ Our intervention is feasible for children with cancer, is developmentally appropriate for children 7-17 years of age, and demonstrates promise to improve quality of life outcomes for children with cancer and their parents.
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Pediatric blood & cancer · Apr 2015
Comparative Study Clinical TrialA controlled study of internalizing symptoms in older adolescents with sickle cell disease.
Due to the ongoing medical challenges we hypothesized that older adolescents with sickle cell disease (SCD) would report greater rates of internalizing symptoms and diagnoses. This study is a follow-up to a previous study [1] that found few differences between the emotional well-being of children ages 8-15 with SCD and comparison peers. Our aim is to re-assess internalizing symptoms of youth with SCD and comparison peers at age 18. ⋯ Psychiatric interview data for both groups of older adolescents suggested considerable psychopathology; questionnaire data for both groups were in the normal range. We report few significant differences-more phobias in comparisons peers; more tension-anxiety and fatigue-inertia reported by youth with SCD. The overall findings suggest considerable resilience for youth with SCD, but both groups of adolescents report significant rates of psychopathology similar to national rates.
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Pediatric blood & cancer · Apr 2015
Clinical TrialAdolescent end of life preferences and congruence with their parents' preferences: results of a survey of adolescents with cancer.
Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers. ⋯ Adolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents' EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes.
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Pediatric blood & cancer · Apr 2015
Clinical TrialFactors affecting response to everolimus therapy for subependymal giant cell astrocytomas associated with tuberous sclerosis.
The aim of the study was to investigate factors affecting response to everolimus, a mammalian-target-of-rapamycin (mTOR) inhibitor, of subependymal giant cell astrocytomas (SEGA) in patients with tuberous sclerosis complex (TSC). ⋯ Everolimus is an effective and safe treatment option for TSC-related SEGA. Drug dose titration according to blood concentration did not appear to be crucial to achieve clinical efficacy; however, concomitant anticonvulsant therapy may affect response to mTOR inhibitors.
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Pediatric blood & cancer · Apr 2015
Steroid-resistant kaposiform hemangioendothelioma: a retrospective study of 37 patients treated with vincristine and long-term follow-up.
Kaposiform hemangioendothelioma (KHE) with Kasabach-Merritt phenomenon (KMP) still remains a particular and life-threatening disease. The purpose of this study was to evaluate the efficacy of vincristine (VCR) and the possibility of replacement with steroids in the treatment of steroid-resistant KHE with KMP. ⋯ VCR appears to be a safe and effective treatment option in the management of steroid-resistant KHE with KMP, and recommended as first-choice treatment.