St George's Online Research Archive

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    10957 research outputs found

    Exploring healthcare priorities, barriers, access and experiences of a family-centred approach among families seeking asylum in North London

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    Background Children and families seeking asylum have significant unmet health needs. The Respond service was established in response to high numbers of families seeking asylum arriving in Camden (London, UK) in August 2021 and delivers hospital and community-based holistic assessment and infectious disease screening for this population. Families are seen in a joint appointment by a multidisciplinary team of adult and paediatric health professionals. We explored the priorities, barriers and experiences around healthcare access among families using the service and the acceptability and perceived effectiveness of a family-centred approach from the perspective of service users, service providers and key stakeholders. Methods We employed qualitative and quantitative approaches. Questionnaires and semistructured interviews were completed between July and September 2022. Questionnaires were built on Google Forms and Envoy Messenger (Healthcare Communications). Thematic analysis was performed and structured by key themes. Data were analysed with the assistance of NVivo. Results Access to dental care, primary care and immunisations were identified as key priorities for families. Significant barriers of access to care included understanding (language), situation (temporary accommodation) and awareness (unfamiliarity with systems, digital poverty, signposting). The Respond family-centred model was positively received by service users, service providers and stakeholders. Benefits included the provision of holistic family-centred care and support, efficiency and value-for-money for the health service. Areas needing ongoing input were language barriers, educational support for staff and service users and continued collaboration and co-creation between service providers and service users. Conclusion Recognising the priorities and barriers identified in this study is crucial for enhancing access to and utilisation of services within this underserved community. The Respond family-centred model was well received and perceived as effective by service users, providers and stakeholders. It serves as a foundational framework for developing tailored services for children and families seeking asylum across the UK and internationally

    Genetic Diagnoses Among Congenital Anomaly Cases in Europe: Data From the EUROCAT Network

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    Background Surveillance of congenital anomaly prevalence over time can identify new teratogens. Anomalies with a genetic cause are excluded from the monitoring. Objectives We examined temporal changes in the proportion of genetic diagnoses among cases with a congenital anomaly. Methods Data was used from twenty EUROCAT congenital anomaly registries over the birth years 2013 and 2022. All pregnancy outcomes were included. Multilevel binomial regression models were fitted to estimate the annual change in the proportion of genetic diagnoses of all anomalies by registry. Results were additionally reported, excluding cases with trisomy 13, 18, or 21. Results Overall, 20% of the 100,099 cases in the study had a genetic diagnosis, and this proportion increased annually by 1.4% (95% CI, 0.8%–1.9%); an absolute increase of approximately 3% from 2013 to 2022. After excluding the trisomies, the overall proportion was 10% with an annual increase of 1.2% (95% CI 0.4%–2.0%). There was considerable variation in the proportion of genetic cases per registry. An increasing proportion of genetic diagnoses was found for five congenital anomaly groups, after excluding the trisomies. We hypothesise that the increase in genetic diagnoses is due to increased access to clinical genetic services, more extensive genetic testing, and the identification of new genes as causes of congenital anomalies. Conclusions The modest increase in genetic diagnoses among cases with a congenital anomaly is not expected to have a large impact on the surveillance of the non-genetic anomalies in the EUROCAT network. EUROCAT will continue to monitor the proportion of genetic diagnoses every five years

    Factors associated with asthma attack recurrence in Ecuadorian children: longitudinal study of potential impact of the COVID-19 pandemic lockdown

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    Background The COVID-19 pandemic caused a major disruption in access to and use of health resources and facilities. There are limited longitudinal data from low-resource settings on the impact of pandemic mitigation strategies and medication use on asthma attacks in children. Methods We did a longitudinal study of risk factors for asthma attack recurrence among children aged 5–17 years presenting with an attack to emergency rooms in public hospitals in Ecuador. Children were followed for at least 12 months by monthly telemonitoring. Cox regression models for multiple recurrences were used to identify potential risk factors. Results 213 asthmatic children were recruited from May 2019 to March 2020 when recruitment was interrupted by a COVID-19 lockdown: 97% were followed for at least 12 months (median 419 days, IQRs 393–421 days). In multivariable analysis, the lockdown effect (adjusted HR 0.35, 95% CI 0.22 to 0.56, p<0.001) and use of inhaled corticosteroids (adjusted HR 0.64, 95% CI 0.43 to 0.93, p=0.020) were strongly protective against recurrence while short-acting β2 agonist use was associated with increased recurrence, particularly among children with a previous asthma diagnosis (interaction p=0.033). Other risk factors were household mould (adjusted HR 1.42, 95% CI 1.03 to 1.95, p=0.031) and number of prerecruitment emergency room visits (adjusted HR 1.05, 95% CI 1.00 to 1.11, p=0.040). Conclusion Our data show in a population of asthmatic children from marginalised urban neighbourhoods in Ecuador, that use of inhaled corticosteroids was protective against asthma attack recurrence as were mitigation strategies implemented during the COVID-19 pandemic to reduce transmission of respiratory viruses

    Fatigue in children and young people up to 24 months after infection with SARS-CoV-2

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    Persistent fatigue is common following acute SARS-CoV-2 infection. Little is known about post-infection fatigue trajectories in children and young people (CYP). This paper reports on a longitudinal analysis of the Children and Young People with Long COVID study. SARS-CoV-2-positive participants, aged 11-to-17-years at enrolment, responding to follow-ups at 3-, 6-, 12-, and 24-months post-infection were included. Fatigue was assessed via the Chalder Fatigue Scale (CFQ; score range: 0-11, with ≥4 indicating clinical case-ness) and by a single-item (no, mild, severe fatigue). Fatigue was described cross-sectionally and examined longitudinally using linear mixed-effects models. Among 943 SARS-CoV-2-positive participants, 581 (61.6%) met CFQ case-ness at least once during follow-up. A higher proportion of ever-cases (vs. never-cases) were female (77.1% vs. 54.4%), older (mean age 15.0 vs. 13.9 years), and met Post-COVID Condition criteria 3-months post-infection (35.6% vs. 7.2%). The proportion of CFQ cases increased from 35.0% at 3-months to 40.2% at 24-months post-infection; 15.9% meet case-ness at all follow-ups. Single-item mild/severe responses showed sensitivity (≥0.728) and specificity (≥0.755) for CFQ case ascertainment. On average, CFQ scores increased by 0.448 points (95% CI, 0.252 to 0.645) over 24-months, but there were subgroup differences (e.g., fatigue increased faster in females than males and improved slightly in those meeting Post-COVID Condition criteria 3-months post-infection while worsening in those not meeting criteria). Persistent fatigue was prominent in CYP up to 24 months after infection. Subgroup differences in scores and trajectories highlight the need for targeted interventions. Single-item assessment is a practical tool for screening significant severe fatigue

    The Postnatal outcomES of Fetal Cortical mAlformations (PESCA) Study: A Multicentre Historical Cohort Study

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    Objectives To provide further evidence on the outcomes associated with fetal malformations of cortical development (MCD), currently informed by data from symptomatic paediatric cohorts, this study provides a new classification system. Design Multicentre retrospective cohort study. Setting Fetal medicine units of three tertiary centres in the United Kingdom and Italy. Population 118 foetuses diagnosed with MCD by ultrasound and/or magnetic resonance imaging included. Methods The cases were classified according to their presumed aetiology (genetic, haemorrhage, dysgenesis, infection) and imaging findings (focal, diffuse, mantle, sulcation). Neurodevelopmental delay was classified as mild, moderate or severe. Cases with missing information on postnatal outcome were excluded. Main Outcome Measures Postnatal neurodevelopmental outcome ascertained from the infant's neurological assessments according to international performance scales, depending on the age. Results There were 52/118 (44%) livebirths, 64/118 (54.2%) terminations of pregnancy (TOP) and 2/118 (1.6%) intrauterine demises. Twenty‐five of 46 cases (54.3%, 95% CI 39–69.1) that survived the neonatal period had a normal or mildly delayed neurological development. The commonest aetiology was genetic, and the most frequent radiological finding was reduced sulcation. The best neurological outcome was found in children with focal lesions; those with diffuse hemispheric lesions had the worst one. Conclusion This is the largest cohort of foetuses diagnosed with MCDs systematically classified by aetiology and radiological findings. In this retrospective cohort of liveborn survivors, over half had normal or mildly abnormal neurodevelopmental outcomes. Prognosis varied according to lesion pattern and suspected aetiology. Fetal MCDs in this study had better neurodevelopmental outcomes than previously reported, though findings should be interpreted with caution given selection and follow‐up limitations

    The Impact of Dating Twin Pregnancy by the Larger, Smaller or Mean Twin Crown-Rump Length: A Retrospective Cohort Study.

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    OBJECTIVE: To evaluate the impact of twin dating by ultrasound-measured crown-rump length (CRL) of the larger (CRL-L), smaller (CRL-S) or mean twin measurement (CRL-M) on the rates of preterm birth (PTB) and detection of small for gestational age (SGA) births. DESIGN: A retrospective cohort study. SETTING: A tertiary fetal medicine centre (London, UK). POPULATION OR SAMPLE: All twin pregnancies between 1998 and 2023 who underwent first trimester CRL ultrasound assessment and fetal growth assessment. METHODS: Data collection included CRL measurement, estimated fetal weight (EFW), pregnancy outcome and birthweight (BW) for each twin. Pregnancies were retrospectively re-dated by CRL-S, CRL-L and CRL-M. MAIN OUTCOME MEASURES: SGA  0.999 and p = 0.765 respectively). CONCLUSIONS: Dating by the smaller, larger or mean twin CRL does not significantly alter rates of extreme preterm birth, SGA detection or SGA birth. Dating by the mean twin CRL reduces stigmatisation of the smaller twin and retains the utility of accurate gestational age assessment without impacting clinical outcomes

    Changes in life satisfaction, self-esteem, and self-rated health before, during, and after becoming a young carer in the UK: a longitudinal, propensity score analysis

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    Background The health of young carers is poorer, on average, than their peers. The timing and persistence of health and wellbeing changes around becoming a young carer are unknown. We investigated how health and wellbeing change before, during and after becoming a young carer in the UK and whether this varies by caring intensity, age, gender, ethnicity, or household income. Methods We used data from the UK Household Longitudinal Study (2009–2023) on young people aged 10–25. Outcomes were self-rated health, life satisfaction and self-esteem (8-item Rosenberg scale). We used propensity score matching to match young carers to similar non-carers and applied piecewise growth curve modelling to model health and wellbeing trajectories for young carers and non-carers. Analyses were stratified by caring intensity (hours and recipient), age, gender, household income and ethnicity. Samples varied from 2320 (self-esteem by age-group) to 4606 (self-rated health by household income). Findings Approximately 12% (n = 2400/16,622) of young people became young carers. Young carers had lower life satisfaction two years prior to becoming a young carer (−0.03, 95% confidence interval: −0.09, −0.01) and this difference persisted for three years after. Young carers who cared for 10 or more hours/week (−0.03, 95% confidence interval: −0.10, 0.04), those from Black ethnic groups (−0.22, 95% confidence interval: −0.38, −0.05), and those from households in the lowest fifth of income had larger differences in life satisfaction before and during becoming a young carer (−0.05, 95% confidence interval: −0.13, 0.04). We observed no differences in self-esteem or self-rated health during or after becoming a young carer. Interpretation These findings highlight the importance of early identification and support for young carers plus reducing the care loads of young carers to prevent declines in wellbeing. Funding The project has been funded by the Nuffield Foundation and the Joint Programming Initiative More Years Better Lives from the national funding body UK Economic and Social Research Council

    Risk of invasive meningococcal disease in people with sickle cell disease: A systematic review.

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    BACKGROUND: Asplenia and splenic dysfunction is associated with an increased risk of severe and fatal infections, especially due to encapsulated bacteria including Streptococcus pneumoniae, Haemophilus influenzae serotype b (Hib) and Neisseria meningitidis. People with sickle cell disease (SCD) develop recurrent splenic infarcts rendering them functionally asplenic. Consequently, additional vaccination against these three pathogens is recommended. There is robust evidence of an increased risk for invasive pneumococcal (IPD) and Hib disease, in people with SCD, but for not invasive meningococcal disease (IMD). METHODS: We conducted a systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) recommendations. Studies published in any language before June 2024 and including people with SCD of all ages and from all geographical locations were included. Studies were included if they documented bacterial culture and/or PCR in patients with SCD with suspected infection. The primary outcome was to estimate IMD risk in people with SCD. Secondary outcomes included estimating the risk of IMD and Hib disease in people with SCD. FINDINGS: We identified 3804 publications and included 86 in the final analyses. Among 74 cohort studies published during 1971-2023, there were three IMD cases among 26,404 persons with SCD compared with 570 IPD and 113 Hib cases. Eight case-control studies published during 1983-2022 reported one IMD case among 932 people with SCD (0.1%) compared to 118 IMD cases among 7143 people without SCD (1.65%). In contrast, there were 126 IPD cases (126/932, 13.5%) in people with SCD compared to 588 (588/7143, 8.2%) in those without SCD. For Hib, the rates were 32/932 (3.4%) and 316/7143 (4.4%), respectively. After including all published studies, we identified five IMD cases in people with SCD across studies published worldwide during 1965-1995 and all five survived their infection. INTERPRETATION: We found no evidence of any increased risk of IMD in people with SCD. This has important implications for policymakers in countries and organisations that currently recommend meningococcal vaccination for people with SCD

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