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Impact of sociodemographic and clinical factors on offer and parental consent to postmortem following stillbirth or neonatal death: a UK population-based cohort study
  1. Margaret J Evans1,2,3,
  2. Elizabeth S Draper2,
  3. Lucy K Smith2
  1. 1 Pathology, University of Edinburgh, Edinburgh, UK
  2. 2 University of Leicester College of Life Sciences, Leicester, UK
  3. 3 Pathology, Royal Infirmary of Edinburgh, Edinburgh, UK
  1. Correspondence to Dr Lucy K Smith, University of Leicester College of Life Sciences, Leicester LE1 7RH, UK; lks1{at}le.ac.uk

Abstract

Objective To identify factors associated with the offer of and consent to perinatal post-mortem.

Design National population-based cohort study

Setting The UK.

Population 26 578 perinatal deaths born between 1 January 2013 and 31 December 2017.

Main outcome measures Postmortem offer by clinical staff; parental consent to post-mortem.

Results Postmortem offer rates were high but varied significantly with time of death from 97.8% for antepartum deaths to 88.4% for neonatal deaths following neonatal admission. Offer rates did not significantly vary by gestation, year of birth, mother’s socioeconomic deprivation, ethnicity or age. Only 44.5% of parents consented to a postmortem. Mothers from the most deprived areas were less likely to consent than those from the least deprived areas (relative risk (RR)=0.76, 95% CI 0.71 to 0.80). Consent rates were similar for mothers of white, mixed, Asian Indian, black Caribbean and black African ethnicity (43%–47%), but significantly lower for mothers of Asian Pakistani (20%) and Asian Bangladeshi (18%) ethnicity. Consent increased with increasing gestation (p<0.001) and was lower for deaths following neonatal unit admission than for antepartum death (RR 0.71, 95% CI 0.67 to 0.75).

Conclusions The current profile of cause of perinatal deaths in the UK is likely to be biased with less postmortem information available for babies dying in the neonatal period and those born to mothers from deprived areas and of Asian Pakistani or Asian Bangladeshi ethnicity. Such bias severely limits the design of effective strategies for reducing mortality in these high-risk groups. These findings have implications for high-income countries seeking to explore and improve the understanding of perinatal deaths.

  • neonatology
  • mortality
  • health services research
  • epidemiology
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Footnotes

  • Contributors The corresponding author attests that all listed authors meet authorship criteria and that nobody who meets these criteria has been omitted from the list. All authors contributed to the overall conception and design of the study. LS analysed the data. All authors contributed to the interpretation of results and drafting of the manuscript. All authors read and approved the final manuscript. LS is the guarantor.

  • Funding MBRRACE-UK is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). HQIP is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote quality improvement in patient outcomes. The Clinical Outcome Review Programmes, which encompass confidential enquiries, are designed to help assess the quality of healthcare, and stimulate improvement in safety and effectiveness by systematically enabling clinicians, managers and policy makers to learn from adverse events and other relevant data. HQIP holds the contract to commission, manage and develop the NCAPOP, comprising around 40 projects covering care provided to people with a wide range of medical, surgical and mental health conditions. The programme is funded by NHS England, the Welsh Government and with some individual projects, other devolved administrations and crown dependencies (www.hqip.org.uk/national-programmes). LKS is funded by a National Institute for Health Research Career Development Fellowship. This article presents independent research funded by the National Institute for Health Research (NIHR).

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

  • Competing interests ED reports grants from HQIP. LS reports grants from HQIP and NIHR.

  • Patient consent for publication Not required.

  • Ethics approval Approvals were granted for UK collection of patient identifiable data and access to statutory data without consent as follows: England and Wales—The Confidentiality Advisory Group of the Health Research Authority: ECC 5-05 (f)/2012 (from 10 October 2012); 15/CAG/0119 (from 1 May 2015); Health & Social Care Information Centre (HSCIC), Data Access Advisory Group: IC604DS; Scotland—The NHS Scotland Caldicott Guardian: 2014-62 MBRRACE-UK Programme—Update (May 2013); The Privacy Advisory Committee, ISD, NHS National Services Scotland: PAC16/14. Due to the different data privacy arrangements in Northern Ireland, only de-identified data are provided to the MNICORP programme.

  • Provenance and peer review Not commissioned; internally peer reviewed.

  • Data availability statement Data may be obtained from a third party and are not publicly available. Data may be requested from the data controller, the Healthcare Quality Improvement Partnership (HQIP). A Data Access Request Form can be obtained from https://www.hqip.org.uk/national-programmes/accessing-ncapop-data/%23.XQeml_lKhjU

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