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1.
Patient Educ Couns ; 104(12): 3008-3015, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33985845

RESUMO

OBJECTIVE: To evaluate an interactive group psychoeducation programme for children treated for leukaemia. METHODS: A longitudinal randomised controlled study across four UK hospitals with an immediate (N = 26) and delay control group (N = 32). The intervention covered the pathophysiology of leukaemia, its treatment, side effects and the importance of positive health behaviours. Primary outcomes were parent-reported child health related quality of life (HRQoL) and behavioural difficulties. Secondary outcomes were child-reported HRQoL, cancer-specific HRQoL, child confidence, caregiver burden, and treatment anxiety. Measures were completed pre- and immediately post-intervention, and at 13 and 26-weeks follow-up. Change over time was analysed using multilevel modelling. Acceptability questionnaires rated the intervention on benefits, recommendations, and barriers to participation. RESULTS: The intervention significantly improved parent-reported child HRQoL but did not have a significant effect on other outcomes. Acceptability of the intervention was high. CONCLUSIONS: This study provides initial evidence that interactive group psychoeducation is acceptable to families and improves HRQoL in children with leukaemia. Difficulties with recruitment removed power to detect effect sizes that are plausible for psychoeducational interventions. PRACTISE IMPLICATIONS: Further studies to explore the potential of psychoeducation to improve outcomes for children with leukaemia and an examination of barriers to participation within this population are warranted.


Assuntos
Leucemia , Qualidade de Vida , Humanos , Leucemia/terapia , Estudos Longitudinais , Pais , Inquéritos e Questionários
2.
Neuroreport ; 30(2): 95-101, 2019 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-30422939

RESUMO

The neurophysiological underpinnings of learning disabilities remain unknown. In this clinical study, we recorded electroencephalograms for a large sample of children with learning disabilities (LD) and healthy control children (n=216) during resting states in which the eyes were either open or closed. We calculated the power and lagged phase coherence in six main frequency bands (delta, theta, lower and upper alpha, and lower and upper beta) to re-evaluate the question of whether children with LD show frontal theta power increases and posterior alpha band decreases on the basis of patterns of electroencephalogram oscillation, which could then be considered as evidence for the so-called 'maturational delay hypothesis.' We identified a general (not restricted to frontal electrodes) power increase in the theta band and no accompanying concomitant alpha band decrease at the posterior electrode position. In addition, we observed increased beta band power at frontal electrodes for LD children. With respect to lagged phase coherence, which is a coherence measure not influenced by volume conduction, we identified decreased coherence for children with LD in the upper alpha band during the eyes closed condition. We interpret this LD-specific resting-state activation pattern as indicating a suboptimally functioning neural resting-state network that provides a detrimental 'starting point' for task-specific brain activations.


Assuntos
Encéfalo/fisiopatologia , Eletroencefalografia/métodos , Deficiências da Aprendizagem/epidemiologia , Deficiências da Aprendizagem/fisiopatologia , Rede Nervosa/fisiopatologia , Descanso/fisiologia , Ondas Encefálicas/fisiologia , Criança , Feminino , Humanos , Deficiências da Aprendizagem/diagnóstico , Masculino , Arábia Saudita/epidemiologia
3.
Genet Test Mol Biomarkers ; 20(3): 154-7, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26890443

RESUMO

AIMS: Sickle-cell anemia and ß-thalassemia are two of the most common autosomal recessive disorders in the developing world. The severity of the problem and the pressure it exerts on the health services in the Kingdom of Saudi Arabia forced the introduction of a national premarital screening program to lessen its impact on the society. Furthermore, a significant effort has been exerted in the elucidation of the genetic causes of such diseases to facilitate diagnosis and detection of carriers. METHODS: We have designed and validated the use of custom TaqMan(®) genotyping assays for the rapid detection of IVS-I-1 (G>A), IVS-I-5 (G>C), codon 39 (C>T), and IVS-I-110 (G>A) mutations in transfusion-dependent ß-thalassemia patients' cohort. RESULTS: We demonstrated that IVS-I-5 (rs33915217) is the most common single-nucleotide variant in our cohort, with the variant allele constituting 26% of the total alleles investigated. However, this variant was not found in 352 alleles screened from buccal swab DNA obtained from healthy volunteers. CONCLUSION: The TaqMan single nucleotide polymorphism (SNP) genotyping assays are a rapid, accurate, and cost-effective method for the initial screening of ß-thalassemia cases, which will minimize the need for direct sequencing of the HBB gene, thus reducing detection costs and increasing throughput.


Assuntos
Globinas beta/genética , Talassemia beta/genética , Alelos , Anemia Falciforme/genética , Códon , Análise Mutacional de DNA/métodos , Frequência do Gene , Estudos de Associação Genética/métodos , Genótipo , Técnicas de Genotipagem/métodos , Humanos , Reação em Cadeia da Polimerase/métodos , Polimorfismo de Nucleotídeo Único , Reprodutibilidade dos Testes , Arábia Saudita , Talassemia beta/sangue
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