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1.
Pediatr Blood Cancer ; 66(4): e27547, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30408306

RESUMO

BACKGROUND: Adolescent and young adult (AYA) survivors of cancer and central nervous system (CNS) tumors endure major life disruptions with their diagnosis, treatment, and the burden of emerging learning difficulties. Survivors and their parents often struggle to obtain more academic support as survivors transition through school. This study explored the knowledge and experience survivors and their parents need as they progress through school to college. METHODS: This cross-sectional study examined childhood cancer and CNS tumor survivors, aged 11 to 21 years, with a known learning difficulty (Individual Education Plan, 504 Plan) and their parents. We assessed participants' knowledge of and experience with transition planning for postsecondary education and independent living. RESULTS: Ninety-two AYA survivors and parents (45 survivors, 47 parents) completed the survey. High school-aged survivors described their learning difficulties better than middle school-aged survivors. Survivors estimated their abilities higher than did their parents. Despite a majority of survivors expecting to attend college, 68.5% of survivors and 57.9% of parents were not certain how to get special accommodations for standardized college entrance exams. Only 20.8% of survivors were aware of what a transition plan includes. Parents understood the transition planning process and when it should begin better than the students (P = 0.001), but many parents (40.0%) were still unsure. CONCLUSIONS: AYA survivors and parents lack knowledge necessary to successfully transition to their goals after high school. Greater education is needed.


Assuntos
Sobreviventes de Câncer/educação , Neoplasias , Educação de Pacientes como Assunto , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino
2.
J Clin Psychol Med Settings ; 21(2): 136-43, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24668336

RESUMO

Given the barriers to conducting long-term assessment of neurocognitive and psychosocial functioning of those treated in infancy for central nervous system (CNS) tumors, a multi-site feasibility study was conducted. The primary objective was to demonstrate that it is feasible to identify, locate and assess the functioning of children treated on the same protocol 10-years post-treatment. Six sites obtained institutional approval, identified and recruited subjects, and obtained comprehensive neurocognitive and psychosocial data. All feasibility objectives were met. Barriers to participation included length of time for Institutional Review Board submission and review, clinical demands, limited eligible participants at individual institutions, difficulty locating long-term subjects and stipend/reimbursement concerns. Results indicate that long-term studies are feasible and essential given the need to address long-term issues of children treated at a young age for CNS tumors, especially as they relate to later academic and vocational planning, but require significant coordination and commitment of cooperative group and institutional resources.


Assuntos
Neoplasias do Sistema Nervoso Central/psicologia , Ensaios Clínicos como Assunto/métodos , Comportamento Cooperativo , Coleta de Dados/métodos , Nível de Saúde , Saúde Mental/estatística & dados numéricos , Cooperação do Paciente/estatística & dados numéricos , Adolescente , Neoplasias do Sistema Nervoso Central/terapia , Criança , Pré-Escolar , Escolaridade , Função Executiva/fisiologia , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Inteligência/fisiologia , Masculino , Memória/fisiologia , Processos Mentais/fisiologia , Resultado do Tratamento
3.
Neurology ; 87(24): 2575-2584, 2016 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-27956565

RESUMO

OBJECTIVE: To assess the efficacy of lovastatin on visuospatial learning and attention for treating cognitive and behavioral deficits in children with neurofibromatosis type 1 (NF1). METHODS: A multicenter, international, randomized, double-blind, placebo-controlled trial was conducted between July 2009 and May 2014 as part of the NF Clinical Trials Consortium. Children with NF1 aged 8-15 years were screened for visuospatial learning or attention deficits (n = 272); 146 children demonstrated deficits at baseline and were randomly assigned to lovastatin (n = 74; 40 mg/d) or placebo (n = 70). Treatment was administered once daily for 16 weeks. Primary outcomes were total errors on the Cambridge Neuropsychological Test Automated Battery Paired Associate Learning task (visuospatial learning) and the Score subtest from the Test of Everyday Attention for Children (sustained attention). Secondary outcomes measured executive function, attention, visuospatial skills, behavior, and quality of life. Primary analyses were performed on the intention-to-treat population. RESULTS: Lovastatin had no significant effect on primary outcomes after 16 weeks of treatment: visuospatial learning (Cohen d = -0.15, 95% confidence interval -0.47 to 0.18) or sustained attention (Cohen d = 0.19, 95% confidence interval -0.14 to 0.53). Lovastatin was well tolerated, with no increase in reported adverse events compared to placebo. CONCLUSIONS: Lovastatin administered once daily for 16 weeks did not improve visuospatial learning or attention in children with NF1 and is not recommended for amelioration of cognitive deficits in this population. CLINICALTRIALSGOV IDENTIFIER: This study was registered at ClinicalTrials.gov (NCT00853580) and Australian New Zealand Clinical Trials Registry (ACTRN12607000560493). CLASSIFICATION OF EVIDENCE: This study provides Class I evidence that for children with NF1, lovastatin does not improve visuospatial learning or attention deficits.


Assuntos
Função Executiva/efeitos dos fármacos , Lovastatina/uso terapêutico , Neurofibromatose 1/tratamento farmacológico , Atenção/efeitos dos fármacos , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Método Duplo-Cego , Feminino , Humanos , Aprendizagem/efeitos dos fármacos , Masculino , Testes Neuropsicológicos , Qualidade de Vida
4.
J Child Neurol ; 28(1): 45-9, 2013 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-22496119

RESUMO

Children with neurofibromatosis type 1 are at increased risk for the development of attention problems relative to their unaffected peers. Previous studies have reported deficits in sustained auditory attention, but other aspects of attention, including sustained visual attention, divided attention, response inhibition, and selective attention, have not been consistently documented. In the present study, we specifically investigated attention skills in children with neurofibromatosis type 1 using measures of visual and sustained auditory attention, divided attention, selective attention, and response inhibition. Consistent with previous reports, we confirmed the presence of deficits in sustained visual and auditory attention in children with neurofibromatosis type 1 but also identified deficits in divided attention and response inhibition. Based on the high frequency and wide spectrum of attention system impairments in this at-risk population, we advocate screening children with neurofibromatosis type 1 for attention problems and providing appropriate interventions that address all aspects of their executive functioning.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/etiologia , Neurofibromatose 1/complicações , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Criança , Função Executiva , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Estimulação Luminosa , Escalas de Graduação Psiquiátrica , Estatísticas não Paramétricas
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