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Demographic and Psychosocial Influences on Treatment Adherence for Children and Adolescents with PKU: A Systematic Review.

ABSTRACT: Phenylketonuria (PKU) is a rare genetic disorder in which the amino acid phenylalanine cannot be sufficiently metabolised. Although a build-up of phenylalanine causes irreversible cognitive impairment, this can be prevented through a strict, lifelong diet restricted in natural protein. Despite the severe consequences of poor metabolic control, many children and adolescents have phenylalanine levels above their recommended limits. This systematic review was the first to examine studies reporting demographic and/or psychosocial influences on blood phenylalanine levels, with the aim to identify factors that were robustly linked with metabolic control. Four electronic databases were searched, yielding 1,808 articles. Articles were included if they reported a statistical examination of the association between one or more demographic or psychosocial factor(s) and metabolic control (as measured by blood phenylalanine concentration) for children and adolescents with PKU. Twenty-nine studies were selected for inclusion, which examined a range of child, parent and family factors related to blood phenylalanine levels. The most reproducible association was with child age, with metabolic control worsening with increasing age. This suggests that interventions promoting treatment adherence would be particularly beneficial for adolescents. There was a paucity of studies in some areas, and the quality of included studies varied; therefore, the conclusions of this review are preliminary. Research recommendations focus on promoting the growth of the evidence-base to support clinical practice.

SUBMITTER: Medford E

PROVIDER: S-EPMC5953888 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Demographic and Psychosocial Influences on Treatment Adherence for Children and Adolescents with PKU: A Systematic Review.

Medford Emma E Hare Dougal Julian DJ Wittkowski Anja A

JIMD reports 20170825

Phenylketonuria (PKU) is a rare genetic disorder in which the amino acid phenylalanine cannot be sufficiently metabolised. Although a build-up of phenylalanine causes irreversible cognitive impairment, this can be prevented through a strict, lifelong diet restricted in natural protein. Despite the severe consequences of poor metabolic control, many children and adolescents have phenylalanine levels above their recommended limits. This systematic review was the first to examine studies reporting ...[more]

PMID: 28840576

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Project description:BackgroundPokémon GO, an augmented reality game with widespread popularity, can potentially influence players' physical activity (PA) levels and psychosocial well-being.ObjectiveThis review aims to systematically examine the scientific evidence regarding the impact of Pokémon GO on PA and psychosocial well-being in children and adolescents.MethodsUsing the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and the GRADE (Grading of Recommendations, Assessment, Development, and Evaluations) framework, we conducted keyword and reference searches in the PubMed, CINAHL, Web of Science, and Scopus databases. We performed title and abstract screening, full-text review, evidence synthesis, and identified research gaps.ResultsOur review included 10 studies that explored the effect of Pokémon GO on PA or psychosocial well-being among children and adolescents. These studies used diverse designs across multiple countries and regions. Pokémon GO use measures encompassed frequency, experience, adherence, and motivation. PA assessment methods ranged from self-reported questionnaires to technology-based evaluations and qualitative approaches. Psychosocial well-being measures included emotional intelligence, personal well-being, self-control, emotionality, and sociability. In general, the estimated impact of Pokémon GO on PA was positive, with gaming elements and engagement correlating with increased PA levels. However, the effect on psychosocial well-being presented mixed results, with positive associations for sociability but a complex relationship involving well-being and internet gaming disorder. The limitations of these studies comprised the absence of randomized controlled trials, heterogeneity in study designs and outcome measures, and potential confounding bias.ConclusionsOverall, Pokémon GO tends to positively affect PA levels, while the impact on psychosocial well-being remains complex and requires further investigation. Future research should investigate the mechanisms connecting Pokémon GO use with PA and psychosocial well-being and the potential risks of excessive gameplay. These findings can help inform public health interventions to harness gaming technologies for promoting PA and enhancing well-being among the younger generation.Trial registrationPROSPERO International Prospective Register of Systematic Reviews CRD42023412032; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=412032.

Project description:BackgroundThe development of effective treatments for use by non-specialists is listed among the top research priorities for improving the lives of people with mental illness worldwide. The purpose of this review is to appraise which interventions for children with intellectual disabilities or lower-functioning autism spectrum disorders delivered by non-specialist care providers in community settings produce benefits when compared to either a no-treatment control group or treatment-as-usual comparator.Methods and findingsWe systematically searched electronic databases through 24 June 2013 to locate prospective controlled studies of psychosocial interventions delivered by non-specialist providers to children with intellectual disabilities or lower-functioning autism spectrum disorders. We screened 234 full papers, of which 34 articles describing 29 studies involving 1,305 participants were included. A majority of the studies included children exclusively with a diagnosis of lower-functioning autism spectrum disorders (15 of 29, 52%). Fifteen of twenty-nine studies (52%) were randomized controlled trials and just under half of all effect sizes (29 of 59, 49%) were greater than 0.50, of which 18 (62%) were statistically significant. For behavior analytic interventions, the best outcomes were shown for development and daily skills; cognitive rehabilitation, training, and support interventions were found to be most effective for improving developmental outcomes, and parent training interventions to be most effective for improving developmental, behavioral, and family outcomes. We also conducted additional subgroup analyses using harvest plots. Limitations include the studies' potential for performance bias and that few were conducted in lower- and middle-income countries.ConclusionsThe findings of this review support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or lower-functioning autism spectrum disorders. Given the scarcity of specialists in many low-resource settings, including many lower- and middle-income countries, these findings may provide guidance for scale-up efforts for improving outcomes for children with developmental disorders or lower-functioning autism spectrum disorders.Protocol registrationPROSPERO CRD42012002641

Dataset Information

Demographic and Psychosocial Influences on Treatment Adherence for Children and Adolescents with PKU: A Systematic Review.

Publications

Demographic and Psychosocial Influences on Treatment Adherence for Children and Adolescents with PKU: A Systematic Review.

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