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Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis.

ABSTRACT: Purpose:Adults and children with intellectual disability (ID) are vulnerable to preventable morbidity and mortality due to poor quality healthcare. While poor quality care has been commonly identified among children with ID, evidence of the patient safety outcomes for this group is lacking and therefore explored in this review. Data sources:Systematic searches of six electronic bibliographic research databases were undertaken from January 2000 to October 2017, in addition to hand searching. Study selection:Keywords, subject headings and MeSH terms relating to the experience of iatrogenic harm during hospitalisation for children with ID were used. Potentially relevant articles were screened against the eligibility criteria. Non-English language papers were excluded. Data extraction:Data regarding: author(s), publication year, country, sample, health service setting, study design, primary focus and main findings related to measures of quality and safety performance were extracted. Results of data synthesis:Sixteen studies met the inclusion criteria, with three themes emerging: the impact of the assumptions of healthcare workers (HCWs) about the child with ID on care quality and associated safety outcomes; reliance on parental presence during hospitalisation as a protective factor; and the need for HCWs to possess comprehensive understanding of the IDs experienced by children in their care, to scientifically deduce how hospitalisation may compromise their safety, care quality and treatment outcomes. Conclusion:When HCWs understand and are responsive to children's individual needs and their ID, they are better placed to adjust care delivery processes to improve care quality and safety during hospitalisation for children with ID.

SUBMITTER: Mimmo L

PROVIDER: S-EPMC5843001 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis.

Mimmo Laurel L Harrison Reema R Hinchcliff Reece R

BMJ paediatrics open 20180129 1

<h4>Purpose</h4>Adults and children with intellectual disability (ID) are vulnerable to preventable morbidity and mortality due to poor quality healthcare. While poor quality care has been commonly identified among children with ID, evidence of the patient safety outcomes for this group is lacking and therefore explored in this review.<h4>Data sources</h4>Systematic searches of six electronic bibliographic research databases were undertaken from January 2000 to October 2017, in addition to hand ...[more]

PMID: 29637187

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Project description:BackgroundCalcium ions are involved in several human cellular processes including corticogenesis, transcription, and synaptogenesis. Nevertheless, the relationship between calcium channelopathies (CCs) and intellectual disability (ID)/global developmental delay (GDD) has been poorly investigated. We hypothesised that CCs play a major role in the development of ID/GDD and that both gain- and loss-of-function variants of calcium channel genes can induce ID/GDD. As a result, we performed a systematic review to investigate the contribution of CCs, potential mechanisms underlying their involvement in ID/GDD, advancements in cell and animal models, treatments, brain anomalies in patients with CCs, and the existing gaps in the knowledge. We performed a systematic search in PubMed, Embase, ClinVar, OMIM, ClinGen, Gene Reviews, DECIPHER and LOVD databases to search for articles/records published before March 2021. The following search strategies were employed: ID and calcium channel, mental retardation and calcium channel, GDD and calcium channel, developmental delay and calcium channel.Main bodyA total of 59 reports describing 159 cases were found in PubMed, Embase, ClinVar, and LOVD databases. Variations in ten calcium channel genes including CACNA1A, CACNA1C, CACNA1I, CACNA1H, CACNA1D, CACNA2D1, CACNA2D2, CACNA1E, CACNA1F, and CACNA1G were found to be associated with ID/GDD. Most variants exhibited gain-of-function effect. Severe to profound ID/GDD was observed more for the cases with gain-of-function variants as compared to those with loss-of-function. CACNA1E, CACNA1G, CACNA1F, CACNA2D2 and CACNA1A associated with more severe phenotype. Furthermore, 157 copy number variations (CNVs) spanning calcium genes were identified in DECIPHER database. The leading genes included CACNA1C, CACNA1A, and CACNA1E. Overall, the underlying mechanisms included gain- and/ or loss-of-function, alteration in kinetics (activation, inactivation) and dominant-negative effects of truncated forms of alpha1 subunits. Forty of the identified cases featured cerebellar atrophy. We identified only a few cell and animal studies that focused on the mechanisms of ID/GDD in relation to CCs. There is a scarcity of studies on treatment options for ID/GDD both in vivo and in vitro.ConclusionOur results suggest that CCs play a major role in ID/GDD. While both gain- and loss-of-function variants are associated with ID/GDD, the mechanisms underlying their involvement need further scrutiny.

Project description:BackgroundThere is arguing evidence regarding the association between maternal infections during pregnancy and the risk of intellectual disability (ID) in children. This systematic review and meta-analysis are essential to determine and address inconsistent findings between maternal infections during pregnancy and the risk of ID in children.MethodsThe MOOSE and PRISMA guidelines were followed to perform and report on this study. The Medline/PubMed, Web of Science, Embase, and Scopus databases were searched from inception up to March 15, 2023, to identify potentially eligible studies. Inclusion and exclusion criteria were applied, as well as the Newcastle-Ottawa Scale was used to assess the methodological quality of studies included. The included studies were divided into two types based on the participants: (1) ID-based studies, which involved children with ID as cases and healthy children as controls and evaluated maternal infection in these participants; (2) infection-based studies, which assessed the prevalence or incidence of ID in the follow-up of children with or without exposure to maternal infection. We used Random-effects models (REM) to estimate the overall pooled odds ratio (OR) and 95% confidence intervals (CIs). The between-studies heterogeneity was assessed with the χ2-based Q-test and I2 statistic. Subgroup and sensitivity analyses were applied to explore the source of heterogeneity and results consistency.ResultsA total of eight studies including 1,375,662 participants (60,479 cases and 1,315,183 controls) met the eligibility criteria. The REM found that maternal infection significantly increased the risk of ID in children (OR, 1.33; 95% CI, 1.21-1.46; I2 = 64.6). Subgroup analysis showed a significant association for both infection-based (OR, 1.27; 95%CI, 1.15-1.40; I2 = 51.2) and ID-based (OR, 1.44; 95%CI, 1.19-1.74; I2 = 77.1) studies. Furthermore, subgroup analysis based on diagnostic criteria revealed a significant association when maternal infection or ID were diagnosed using ICD codes (OR, 1.33; 95% CI, 1.20-1.48; I2 = 75.8).ConclusionOur study suggests that maternal infection during pregnancy could be associated with an increased risk of ID in children. This finding is consistent across different types of studies and diagnostic criteria. However, due to the heterogeneity and limitations of the included studies, we recommend further longitudinal studies to confirm the causal relationship and the underlying mechanisms.

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Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis.

Publications

Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis.

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