Suchergebnisse

ObjectivesPublic engagement in cohort studies is instrumental to recruitment and retention. However, instead of framing engagement as a means to an end, we advocate for an end in itself approach that attempts to meaningfully share the shaping of the narrative of the cohort with its members.
ApproachThrough an annual postal newsletter, we recruited five cohort members to lead the creation of a digital exhibition about the Aberdeen Children of the 1950s cohort. Our co-curators worked with us and a museum curator to design a narrative-driven overview of the cohort and its members' lives. Additionally, we sent out a questionnaire (by email) asking cohort members about future research directions (n = 741) including a question: "Are there any other aspects of life during the pandemic that you think should be researched?". Both activities aimed to contribute qualitative textual material to be drawn upon in this largely quantitative study.
ResultsThe digital exhibition was unexpectedly well received, becoming the most visited in the university's collection. Co-curators emphasized the socio-historical embeddedness of the cohort, sharing experiences of growing up in times of Aberdeen's booming oil economy. We garnered media attention in newspaper articles and interest from TV producers. Research enabled by the cohort featured in two documentaries, with two cohort members appearing in one.
The questionnaire yielded a response rate of 61%, with just under half providing answers to the open-ended question. Participants found mental health to be of the highest priority to research, contextualizing their rationales in free-text answers (27 mentions). Some of the most common themes included: comparisons with the typhoid epidemic in Aberdeen in the 1960s (9 mentions), and financial struggles (9 mentions).
ConclusionPublic engagement as an end-in-itself social practice is a powerful way to give agency to research participants. Qualitative contextual material can help researchers to ground their quantitative analyses in historical contexts housing populations which may be essential for interpretation and translation of findings to meaningful policies.

Background Informal caregiving has become an integral part of many societies, however there is increasing concern about the well-being of carers and how they manage their care-related responsibilities in conjunction with their health and mental health. Previous studies have reported mixed results with some proposing that carers are intrinsically healthier.
Aims To explore the association between different levels of caregiving and health behaviours and mental health status.
Methods Data were collected through HealthWise Wales (HWW) and linked to healthcare records (N=27,455). These included self-reported data on level of caring responsibilities (0;1-19;20-49;50+ hours per week), whether or not they left employment due to their caring role, mental health using the short Mental Health Inventory (MHI-5) and health behaviour data on smoking status, physical activity and dietary habits. Data on current diagnosis of Anxiety and Depression were drawn from linked healthcare records. Separate logistic regression models adjusted for age, gender and socio-economic status were fitted to assess the association between intensity of caring responsibility and each mental health and health behaviour outcome.
Results Of the 14,451 HWW participants who had complete records, 3,856 (26.7%) reported being an informal carer. Intense carers (20-49 hours per week) were more likely to be physically inactive (OR:1.27, 95%CI:1.04-1.56), smoke cigarettes (OR:1.49, 95%CI:1.11-2.00) and eat unhealthily (OR:1.48, 95%CI:1.13-1.93). They were more also likely to self-report (OR:1.87, 95%CI:1.51-2.32) or have a diagnosis of depression or anxiety (OR:1.57, 95%CI:1.26-1.97). Other levels of caregiving intensity also demonstrated the above associations. Carers who had given up work to care were more likely to be smokers and have common mental disorders.
Conclusion Being an informal carer is associated with unhealthy behaviours and common mental disorders, with a gradient effect dependent on the level of caregiving activity. New interventions that can support carers to improve their health and wellbeing are urgently needed.

ObjectivesResearch using unconsented healthcare data has the potential to have significant public benefit in terms of improved health outcomes. However, due to the sensitive nature of this data, appropriate governance, approvals, and mitigations are crucial to ensure that patient confidentiality and public trust are maintained.
ApproachAs the permissions process can be a barrier to research, we established a local Governance Forum with the aim to streamline processes, increase transparency, and document approval requirements. Governance Forum membership includes representatives from the relevant health board and university departments (e.g., the regional Safe Haven, Information Governance, Ethics Committee, Data Protection, Research and Development). To achieve the Forum's objectives, the regional Safe Haven raises current and potential project scenarios at quarterly meetings to confirm requirements and help develop a clear understanding of the approval pathway, with specific topics discussed with the relevant members out with these meetings as required.
ResultsThe Forum has strengthened communication and collaboration with Forum members which has enabled the Safe Haven to better support researchers. Outputs have included a permission pathway guidance document for researchers. This initial guidance document outlines approval requirements and provides relevant advice and support, with work currently ongoing to build on and improve this. In addition, as channels have been established for onboarding new project types and novel datasets, the diversity of datasets available for research is increasing and the route to approvals is now clearer for both researchers and internal teams. The Governance Forum activity has the potential to facilitate future research which may lead to academic publications and research funding, as well as improved health outcomes and policy change in the longer-term.
ConclusionAlthough the progress so far has had significant impacts, the approval processes remain challenging for certain projects. Therefore, it will be imperative that sufficient resources are available in the future to ensure that further progress can be made via the Governance Forum as well as national initiatives.

ABSTRACTObjectiveTo explore whether children with pelvicalyceal dilatation (PCD, a marker detected during the 18-20 week gestation ultrasound scan in which there is enlargement of tubes that collect urine in the kidney) have more hospital admissions for kidney problems in childhood compared to children without the marker.
Approach We were funded by NISCHR to study outcomes associated with markers of uncertain significance at the second trimester anomaly scan (Welsh Study of Mothers and Babies). Data collected in the WSMB was uploaded to the Secure Anonymised Information Linkage (SAIL) databank and record linked to hospital activity data. Patterns of hospital admissions for renal causes were described and compared between those with no markers and those with PCD. Children were followed up from birth until 31st December 2014 or until the age of 5. A Cox Proportional Hazard Model was used to investigate the impact of PCD on time to first presentation.
Results (Preliminary)Of the WSMB cohort, 20,834 children were eligible for inclusion in analyses. Those with PCD had 6.29 times the hazard of a renal admission compared to those without the marker (95% CI: 3.69 to 10.72). Children with PCD were more likely to have multiple renal admissions to hospital - median (interquartile range) number of renal admissions, 2.5 (1 to 5) compared to 1 (1 , 1) in children without markers.
ConclusionPreliminary analysis suggests there is increased childhood renal morbidity associated with the presence of a PCD marker detected on the 18-20 week gestation ultrasound scan. These findings will inform the discussions clinicians have with parents when discussing the implications of this marker for the health of the chid.

IntroductionWorldwide large cohort studies have invested in community engagement to promote studies and aidrecruitment. HealthWise Wales, a national population study, aims to create a register of 'researchready' participants and provide long-term follow up data on health behaviours, outcomes andwider social and environmental determinants. Public involvement and engagement was key to thedevelopment of HealthWise Wales. We describe how a model for promoting HealthWise Wales wasco-produced with members of the public.
MethodsMembers of the public were invited to take part in a workshop, either in North or South Wales,to discuss public involvement in long-term cohort studies. Information on community engagement,projects that had used the concept of "citizen scientists" to promote involvement, and other largelongitudinal studies was provided to 15 members of the public prior to the meeting. Eight ofthese attended the workshops, to explore the concept of citizen scientist and how it may relateto HealthWise Wales.
ResultsData from two workshops was used to draft a protocol for involvement that was reviewed and refinedby members of the public. The protocol describes two levels of public involvement, HealthWise WalesChampion or Supporter. The Champion is a more formal role that requires promoting the projectat public events, whereas Supporters pledge to promote the study to friends and family. Trainingwas provided to 17 of the 26 members of the public who had expressed interest in becoming HWWChampions. Twelve trained Champions attended 41 events to promote the study and collect 'consentto contact' forms from members of the public.
Conclusions
It is possible to develop a model of community engagement with members of the public to promoteand raise awareness of a national population study in Wales. It is essential that adequate resourceis provided to support the concept.

Acknowledgments: We are very grateful to David Fone for help in the concept of the study. SP received a Translational Health Research Platform Award from the National Institute for Social Care and Health Research (grant reference: TPR08- 15 006) for the development of WECC.JD was supported by The Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer), a UKCRC Public Health Research: Centre of Excellence. Funding from the British Heart Foundation, Cancer Research UK, Economic and Social Research Council (RES-590-28-0005), Medical Research Council, the Welsh Government and the Wellcome Trust (WT087640MA), under the auspices of the UK Clinical Research Collaboration, is gratefully acknowledged. SP was an applicant in the Centre for the Improvement of Population Health through E-records Research (CIPHER), one of four UK e-health Informatics Research Centres funded by a joint investment from: Arthritis Research UK, the British Heart Foundation, Cancer Research UK, the Chief Scientist Office (Scottish Government Health Directorates), the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the Medical Research Council,the National Institute for Health Research, the National Institute for Social Care and Health Research (Welsh Government) and the Wellcome Trust (Grant reference: 7 MR/K006525/1). ; Peer reviewed

Background Heavy alcohol consumption by mothers during pregnancy is associated with developmental problems in their children. However, the impact of light to moderate consumption on the long-term health and educational attainment up to adolescence has not been established.
Main Aim To investigate the association between mother's alcohol use during pregnancy and health and educational attainment of their children up to age 14 years.
Methods Millennium Cohort Study (MCS) children in Wales (1,838), with parental consent, were record-linked to emergency hospital admission data between birth and 14 years (1,795) and National Curriculum Key Stage-Three (KS3) (1,645) records within the Secure Anonymised Information Linkage (SAIL) Databank. Mother's self-reported alcohol use during pregnancy was classified into a) abstain; b) light (1 - 2 units per week/occasion, 1 unit = 8g ethanol)); c) moderate (3 - 6 units per week/3-5 units per occasion) and d) heavy (> 6, dropped due to a paucity of data). Cox regression estimated the risk of emergency hospital admission and multivariate linear regression models estimated the difference in KS3 scores by exposure group.
Results 71% of mothers abstained, 24% were light drinkers and 5% moderate. Light drinking was associated with children's lower risk of emergency hospital admission (HR = 0.85, 95% CI 0.75 - 0.97) and better KS3 scores (β = 0.14, 95% CI 0.05 - 0.23) by age 14 years, when compared to abstaining mothers. Children of mothers who drank moderately had a comparable risk of emergency hospital admission (HR = 1.07, 95% CI 0.79 - 1.46) and a better KS3 score (β = 0.30, 95% CI 0.11 - 0.49), compared to abstaining mothers.
Conclusion Consumption during pregnancy of 1-2 units of alcohol per week/occasion was neither associated with an increased risk of emergency hospital admission nor poor academic attainment in children up to 14 years of age.

IntroductionSelf reported data on health is often burdensome and expensive. Administrative data provides inexpensive global coverage of health and is less prone to social desirability for behaviors such as alcohol consumption. Recent studies have found varying correspondence between self-reported and administrative data for a number of chronic and acute conditions.
Objectives and ApproachWe sought to test the agreement between self-rated heavy drinking (35+ units for women, 50+ for men) and primary care physician (GP) coded (Read mapped ICD-10 codes) heavy drinking, and their association with alcohol related hospital admissions.
We assessed agreement between self-reported and GP coded heavy drinking data, from a prospective UK cohort and linked GP and hospital data using Cohen's kappa (95% CI). Then using Cox regression we the compared the time to alcohol related admission for both. Goodness-of-fit was assessed using AIC.
ResultsOf the 10,892 participants a total of 6,609 were linkable to both the Hospital Admissions database (PEDW) and the GP practice data, with no systematic differences between those linked and not. The sample were mostly female (57%) with a mean age of 48.2 years (SD = 15.5). In total there were 81 alcohol related admissions, with 2.7% classified as heavy drinkers by GPs and 31.7% self-rated. There was poor agreement between raters (K=0.044; 95% CI = 0.037, 0.050). GP coded heavy drinking was strongly associated with admission (β = 1.90 95% CI 1.34, 2.58, AIC = 1350.71), as was self-rating (β = 1.14 (5% CI 0.67, 1.62, AIC = 1358.19).
Conclusion/ImplicationsThe low levels of agreement but similar AICs suggest that self-rated and GP classification are measuring a similar construct but at different levels. This analysis suggest that routinely collected GP ratings of heavy drinking may be a cheaper and more efficient method of assessing heavy drinking at a population level.

Acknowledgments: The authors would like to thank all the families who participated in the 'Growing Up in Wales' birth cohort study and all the research assistants who contributed to recruitment and data collection. Funding: This work was supported by Swansea University, Public Health Wales NHS Trust, and Health and Care Research Wales. This analysis was undertaken with the support of the Farr Institute of Health Informatics Research (MR/K006525/1) and Health Data Research UK (NIWA1). This work was also supported by the National Centre for Population Health and Wellbeing Research (NCPHWR) via Health and Care Research Wales (grant ref. CA02). This research was also supported by the Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer), a UKCRC Public Health Research Centre of Excellence via joint funding (MR/KO232331/1) from the British Heart Foundation, Cancer Research UK, Economic and Social Research Council, Medical Research Council, the Welsh Government and the Wellcome Trust. ; Peer reviewed ; Publisher PDF

Acknowledgements AG was funded by the National Centre for Population Health and Wellbeing Research Wales (WCPHWR), and SP, DF, and JG are members of the NCPHWR team in Cardiff University. We would like to thank the Brecon Group (which comprises all paediatricians and paediatric diabetes healthcare staff in Wales with an interest in Diabetes and endocrinology). The Brecon Group was supported initially by grants from NovoNordisk and subsequently the Welsh Government. Funds from the Economic and Social Research Council, the Medical Research Council, and Alcohol Research UK supported the establishment of the ELASTiC data platform.This study used anonymised data held in the Secure Anonymised Information Linkage (SAIL) Databank. We would like to acknowledge all the data providers who enable SAIL to make anonymised data available for research. Data sharing The datasets used in this study are available in the SAIL Databank at Swansea University, Swansea, UK, but as restrictions apply, they are not publicly available. All proposals to use SAIL data are subject to review by an independent Information Governance Review Panel (IGRP). Before any data can be accessed, approval must be given by the IGRP. The IGRP gives careful consideration to each project to ensure proper and appropriate use of SAIL data. When access has been granted, it is gained through a privacy-protecting safe haven and remote access system referred to as the SAIL Gateway. SAIL has established an application process to be followed by anyone who would like to access data via SAIL at https://www.saildatabank.com/application-process. Funding information: Alcohol Research UK; Medical Research Council; Economic and Social Research Council; Welsh Government; Novo Nordisk; Brecon Group; National Centre for Population Health and Wellbeing Research Wales ; Peer reviewed ; Postprint ; Publisher PDF

IntroductionThe most recent Welsh Antimicrobial Resistance Programme (WARP) report on antibiotic use in primary care found significant variations between Health Boards and hospitals in gross antibiotic use in 2014. The aim of this study was to evaluate the association between socioeconomic deprivation and antibiotic prescribing volumes.
Objectives and ApproachWelsh General Practitioner (GP) antibiotic prescribing data for years 2013 to 2016 for patients' resident in Wales were extracted from the Secure Anonymised Information Linkage GP tables. Deprivation was assessed by linking prescribing events to the Welsh Index of Multiple Deprivation (WIMD) score for the patient's neighbourhood area. The association between deprivation area and antibiotic prescribed (items per 1000 persons per day) was stratified according to the patient's age, sex, prescription year and antibiotic class. A three-level multilevel Poisson regression model of 1.58 million patients nested within 349 GP practices, nested with 67 GP clusters, was specified to assess the associations
ResultsJust over 7.97 million antibiotic items were prescribed between 2013 and 2016. Patients in the most deprived WIMD quintile had an overall prescription rate that was 25.2% higher than those in the least deprived WIMD quintile. The final model revealed that residing in the most deprived WIMD quintile (incidence rate ratio [IRR] = 1.1769, 95% confidence interval [CI] 1.1768 to 1.1770, being female (IRR = 1,2699, 95% CI 1.2698 to 1.2700), being aged $\geq$90 (IRR = 2.0687, 95% CI 2.0683 to 2.0690), and prescription year being 2013 were associated with significantly higher rate of antibiotics prescription. There were significant primary cares clustering of antibiotics prescription in Wales.
Conclusion/ImplicationsThis study provides evidence that patients in areas of higher socioeconomic deprivation are more likely to be prescribed antibiotics in primary care in Wales. Population health prevention strategies aimed at reducing high antibiotic prescription rates should consider targeting areas of high deprivation.

IntroductionEvaluations of healthcare utilisation for children and young people (CYP) with chronic conditions, are increasingly relying upon routinely collected healthcare data to estimate healthcare burden and inform national policy and practice. However, chronic conditions are not consistently or accurately recorded making it difficult to conduct valid epidemiological analyses.
Objectives and ApproachWe explored routinely collected healthcare datasets of 2,122,914 CYP in the English Clinical Practice Research Dataset (CPRD) and 1,636,252 CYP in the Welsh Secure Anonymous Information Linkage (SAIL) databank to identify patients with CP (an exemplar of a chronic neurodisability) from diagnosis coding (G80-83.3). Linked primary care, hospital admission outpatient and mortality data were searched from birth and populations of CYP aged 0-25 years between 2004 and 2014 with and without CP were identified. We detected the ascertainment sources and compared the results from CPRD and SAIL. In a sample of cases G80-83 codes were validated against clinical records.
Results
England: Some 7,500 cases of CP were identified (period prevalence: 3.5 per 1000 CYP). Of those, 36.6% were identified from hospital admissions; 20.6% from GP data, 42.0% were in both datasets with 0.8% from outpatient/ONS mortality data.
Wales: Some 5,400 cases of CP were identified (period prevalence: 3.3 per 1000 CYP). Of those, 38.6% were identified from hospital admissions, 25.3% from GP data, 36.0% were in both datasets, and 0.1% from mortality/outpatient datasets.
729/877(83.1%) cases coded as G80-83 in secondary care case notes were validated cases of CP leaving 16.9% that were incorrectly coded. Approximately 70% of G80 cases were recorded as G80.8-9 (CP other/unspecified). Roughly 30% of cases were only coded as CP on one occasion within the primary and secondary care datasets.
Conclusion/ImplicationsSimilar proportions of CP cases were identified in the two datasets giving similar period prevalences. Inconsistent and incorrect coding will affect the accuracy of these figures and precludes any analysis by disease type/severity. Improved coding of chronic conditions is needed before accurate healthcare analysis of routine data can be undertaken.

Recent studies found evidence of health selective migration whereby healthy people move to less deprived areas and less healthy people move to or stay in more deprived areas. There is no consensus, however, on whether this influences health inequalities. Measures of socio-economic inequalities in mortality and life expectancy are widely used by government and health services to track changes over time but do not consider the effect of migration. This study aims to investigate whether and to what extent migration altered the observed socioeconomic gradient in mortality. Data for the population of Wales (3,136,881) registered with the National Health Service on 01/01/2006 and follow-up for 24 quarters were individually record-linked to ONS mortality files. This included moves between lower super output areas (LSOAs), deprivation quintiles and rural-urban class at each quarter, age, sex, and date of death. Cox regression models were used to estimate the hazard ratios for the deprivation quintiles in all-cause mortality, as well as deprivation change between the start and end of the study. We found evidence of health selective migration in some groups, for example people aged under 75 leaving the most deprived areas having a higher mortality risk than those they left behind, suggesting widening inequalities, but also found the opposite pattern for other migration groups. For all ages, those who lived in the most deprived quintile had a 57% higher risk of death than those in the least deprived quintile, allowing deprivation to vary with moves over time. There was little change in this risk when people were artificially kept in their deprivation quintile of origin (54% higher). Overall, migration during the six year window did not substantially alter the deprivation gradient in mortality in Wales between 2006 and 2011.

Funding Funding for this work was received from Public Health Wales NHS Trust as part of a report on migration and health. Support for the report was also received from the National Centre for Population Health and Wellbeing Research (NCPHWR). The eCATALYsT multiagency dataset and the baseline survey was supported by the Wales Office of Research and Development (SCC99/1/105 and R00/1/017). The follow-up survey was supported by a Welsh Assembly Government/Medical Research Council Health Research Partnership Award (H07-3-030), and the electronic cohort is supported by a National Institute for Social Care and Health Research Welsh Assembly Government Translational Health Research Platform Award (TPR08-020). Data availability statement Data may be obtained from a third party and are not publicly available. The electronic cohort is securely stored and maintained on the Secure Anonymised Information Linkage (SAIL) databank at Swansea University Medical School. The authors welcome general enquiries and ideas for new collaborations. Readers with an interest in further details should contact Professor Shantini Paranjothy, Principal Investigator. ; Peer reviewed ; Publisher PDF

IntroductionEarly alcohol use has significant association with poor health outcomes. Individual risk factors around early alcohol use have been identified, but a holistic, data-driven investigation into health and household environmental factors on early alcohol use is yet to be undertaken.
ObjectivesThis study aims to investigate the relationship between preceding health events, household exposures and early alcohol use during adolescence using a two-stage data-driven approach.
MethodsIn stage one, a study population (N=1,072) were derived from the Millennium Cohort Study (MCS) Wales (born between 2000-2002). MCS data were first linked with electronic-health records. Factors associated with early (<= eleven years old) alcohol use were identified using feature selection and stepwise logistic regression. In stage two, analogous risk factors from MCS were recreated for whole population (N=59,231) of children (born between 1998-2002 in the Welsh Demographic Service Dataset) using routine data to predict the alcohol-related health events in hospital or GP records.
ResultsSignificant risk factors from stage two included poor maternal mental (adjusted odds ratio [aOR]=1.31) and physical health (aOR=1.25), living with someone with alcohol-related problem (aOR=2.16), single-adult household (aOR=1.45), ever in deprivation (aOR=1.66), child's high hyperactivity (aOR=3.57), and conduct disorder (aOR= 3.26). Children with health events, whose health needs are supported (e.g., are taken to the doctor), are at lower risk of early alcohol use.
ConclusionHealth events of the family members and the child can act as modifiable exposures and may therefore inform the development of prevention initiatives. Families with known alcohol problems, living in deprivation, experiencing child behavioural problems and those who are not taken to the doctor are at higher risk of early drinking behaviour and should be prioritised for early years support and interventions to target problem drinking in young people.