Identifying missed clinical opportunities for the earlier diagnosis of HIV in Australia, a retrospective cohort data linkage study

ObjectiveTo determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes.DesignNational cohort, data-linkage study.SettingPICUs in England.PatientsChildren admitted to a UK PICU (1 January 2004 and 31 March 2015) were identified in the Paediatric Intensive Care Audit Network dataset. Linkage to hospital episodes statistics enabled identification of children with a LLC using an International Classification of Diseases (ICD10) code list.Main outcome measuresRandom-effects logistic regression was undertaken to assess risk of death in PICU. Flexible parametric survival modelling was used to assess survival in the year after discharge.ResultsOverall, 57.6% (n=89 127) of PICU admissions and 72.90% (n=4821) of deaths in PICU were for an individual with a LLC.The crude mortality rate in PICU was 5.4% for those with a LLC and 2.7% of those without a LLC. In the fully adjusted model, children with a LLC were 75% more likely than those without a LLC to die in PICU (OR 1.75 (95% CI 1.64 to 1.87)).Although overall survival to 1 year postdischarge was 96%, children with a LLC were 2.5 times more likely to die in that year than children without a LLC (OR 2.59 (95% CI 2.47 to 2.71)).ConclusionsChildren with a LLC accounted for a large proportion of the PICU population. There is an opportunity to integrate specialist paediatric palliative care services with paediatric critical care to enable choice around place of care for these children and families.

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127. MULTI-METHOD CHARACTERIZATION OF INFECTION IN ANCA-ASSOCIATED VASCULITIS: RESULTS: FROM A LONGITUDINAL, MATCHED-COHORT DATA LINKAGE STUDY

Rheumatology ◽

10.1093/rheumatology/kez059.004 ◽

2019 ◽

Vol 58 (Supplement_2) ◽

Author(s):

Shifa Sarcia ◽

Neeraj Dhaun ◽

Jan Sznajd ◽

John Harvie ◽

John McLaren ◽

...

Keyword(s):

Data Linkage ◽

Linkage Study ◽

Matched Cohort ◽

Anca Associated Vasculitis ◽

Cohort Data

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Involving service users in Births and their outcomes: a retrospective birth cohort data linkage study analysing daily, weekly and yearly cycles and their implications for the NHS

International Journal for Population Data Science ◽

10.23889/ijpds.v5i3.1366 ◽

2020 ◽

Vol 5 (3) ◽

Author(s):

Mary Newburn ◽

Miranda Scanlon ◽

Rachel Plachcinski ◽

Alison Jill Macfarlane

Keyword(s):

Birth Cohort ◽

Service User ◽

Public Involvement ◽

Data Linkage ◽

Linkage Study ◽

Service Users ◽

Maternity Service ◽

Maternity Services ◽

Cohort Data

IntroductionWe report on service user participation in ‘Births and their Outcomes’, a population-based, retrospective, birth cohort, data linkage study to analyse the daily, weekly and yearly cycles of births and their implications for the NHS. Although Public Involvement and Engagement (PI&E), also referred to here as Patient and Public Involvement (PPI), has a long history in maternity services, PI&E in maternity data linkage studies is new. We have reported using the GRIPP2 short form. ObjectivesWe aimed to involve and engage a wide range of maternity service users and their representatives to ensure that our use of routinely collected maternity and birth records was acceptable and that our research analyses using linked data were relevant to their expressed safety and quality of care needs. MethodsA three-tiered approach to PPI was used. Having both PPI co-investigators and PPI members of the Study Advisory Group ensured service user involvement was part of the strategic development of the project. A larger constituency of maternity service users was engaged through four workshops held throughout England. ResultsTwo co-investigators with experience of PPI in maternity research were involved from design stage to dissemination. Four PPI study advisors contributed service user perspectives. Engagement workshops attracted around 100 attendees, recruited largely from Maternity Services Liaison Committees and a community engagement group. They supported use of the data, believing the study had potential to improve safety and quality of maternity services. They contributed their experiences and concerns which will assist with interpretation of the analyses. ConclusionUse of PPI ‘knowledge intermediaries’ successfully bridged the gap between data intensive research and lived experience, but more inclusivity in involvement and engagement is required. The concerns and questions of service users provide social legitimacy and a relevance framework for researchers carrying out analyses.

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