Dataset Information

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:BackgroundAlthough evidence shows that poor air quality can harm human health, we have a limited understanding about the behavioural impact of air quality forecasts. Our aim was to understand to what extent air quality warning systems influence protective behaviours in the general public, and to identify the demographic and psychosocial factors associated with adherence and non-adherence to the health advice accompanying these warnings.MethodIn August 2016 literature was systematically reviewed to find studies assessing intended or actual adherence to health advice accompanying air quality warning systems, and encouraging people to reduce exposure to air pollution. Predictors of adherence to the health advice and/or self-reported reasons for adherence or non-adherence were also systematically reviewed. Studies were included only if they involved participants who were using or were aware of these warning systems. Studies investigating only protective behaviours due to subjective perception of bad air quality alone were excluded. The results were narratively synthesised and discussed within the COM-B theoretical framework.ResultsTwenty-one studies were included in the review: seventeen investigated actual adherence; three investigated intended adherence; one assessed both. Actual adherence to the advice to reduce or reschedule outdoor activities during poor air quality episodes ranged from 9.7% to 57% (Median = 31%), whereas adherence to a wider range of protective behaviours (e.g. avoiding busy roads, taking preventative medication) ranged from 17.7% to 98.1% (Median = 46%). Demographic factors did not consistently predict adherence. However, several psychosocial facilitators of adherence were identified. These include knowledge on where to check air quality indices, beliefs that one's symptoms were due to air pollution, perceived severity of air pollution, and receiving advice from health care professionals. Barriers to adherence included: lack of understanding of the indices, being exposed to health messages that reduced both concern about air pollution and perceived susceptibility, as well as perceived lack of self-efficacy/locus of control, reliance on sensory cues and lack of time.ConclusionWe found frequent suboptimal adherence rates to health advice accompanying air quality alerts. Several psychosocial facilitators and barriers of adherence were identified. To maximise their health effects, health advice needs to target these specific psychosocial factors.

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

Project description:ImportanceAlthough research has examined factors associated with child sexual exploitation (CSE), consensus is lacking in regard to which factors should be prioritized, thereby hindering policy reform, prevention efforts, and development of early detection and intervention.ObjectiveTo provide a meta-analytic synthesis of studies examining factors associated with CSE and to quantify their relative importance.Data sourcesElectronic databases searched to June 2019 included Medline, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, EMBASE, and Informit, yielding 396 nonduplicative records. Literature search was performed in July 2019.Study selectionInclusion criteria were quantitative investigations of sexual exploitation and mean sample age of 18 years or younger.Data extraction and synthesisLiterature review and data extraction followed Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. Thirty-seven studies met final inclusion criteria. Two independent reviewers extracted all relevant data. Random-effects meta-analyses were used to derive odds ratios (ORs) for each factor. Data were analyzed from September 1 to October 28, 2019, and prediction intervals calculated in June 2020.Main outcomes and measuresChild sexual exploitation, defined as coerced sexual acts between a child or a young person (aged ≤18 years) and an individual or a group in exchange for money, gifts, substances, or other commodities and associated factors.ResultsThirty-seven unique studies were included with a total of 67 453 unique participants (mean [SD] age of 16.2 [2.5] years; 49.9% female). Fifty-two factors associated with CSE were included in the meta-analysis. The strongest factors significantly associated with exposure to sexual exploitation were engagement in sexual risk behaviors (OR, 6.31 [95% CI, 3.12-12.76]; P < .001), having more than 5 sexual partners (OR, 5.96 [95% CI, 1.63-21.87]; P = .007), a diagnosis of posttraumatic stress disorder (OR, 5.29 [95% CI, 3.40-8.22]; P < .001), historical exposure to child pornography (OR, 5.50 [95% CI, 0.99-30.53]; P = .049), and a history of childhood sexual abuse (OR, 3.80 [95% CI, 3.19-4.52]; P < .001). A number of other potentially modifiable factors had moderate to strong associations.Conclusions and relevanceIn this systematic review and meta-analysis, children and adolescents affected by sexual exploitation showed high levels of sexual risk taking, multiple sexual partners, posttraumatic stress disorder, exposure to child pornography, and childhood trauma. Accurate detection of CSE may prevent this type of sexual violence occurring to adolescents and/or provide opportunities for intervention and recovery. Therefore, prevention and intervention efforts will likely benefit from integrating these factors into screening, assessment, and treatment.

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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