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Headline
This study found less invasive methods of autopsy are likely to be acceptable for bereaved parents and may increase uptake but further studies are required.
Abstract
Background:
Less invasive perinatal and paediatric autopsy methods, such as imaging alongside targeted endoscopy and organ biopsy, may address declining consent rates for traditional autopsy, but their acceptability and accuracy are not known.
Objectives:
The aims of this study were to provide empirical data on the acceptability and likely uptake for different types of autopsy among key stakeholders (study 1); and to analyse existing autopsy data sources to provide estimates of the potential efficacy of less invasive autopsy (LIA) and its projected utility in clinical practice (study 2).
Review methods:
Study 1: this was a mixed-methods study. Parents were involved in research design and interpretation of findings. Substudy 1: a cross-sectional survey of 859 parents who had experienced miscarriage, termination of pregnancy for fetal anomaly, stillbirth, infant or child death, and interviews with 20 responders. Substudy 2: interviews with 25 health professionals and four coroners. Substudy 3: interviews with 16 religious leaders and eight focus groups, with 76 members of the Muslim and Jewish community. Study 2: a retrospective analysis of national data in addition to detailed information from an existing in-house autopsy database of > 5000 clinical cases that had undergone standard autopsy to determine the proportion of cases by clinical indication group for which tissue sampling of specific internal organs significantly contributed to the diagnosis.
Results:
Substudy 1: 91% of participants indicated that they would consent to some form of LIA, 54% would consent to standard autopsy, 74% to minimally invasive autopsy (MIA) and 77% to non-invasive autopsy (NIA). Substudy 2: participants viewed LIA as a positive development, but had concerns around the limitations of the technology and de-skilling the workforce. Cost implications, skills and training requirements were identified as implementation challenges. Substudy 3: religious leaders agreed that NIA was religiously permissible, but MIA was considered less acceptable. Community members indicated that they might consent to NIA if the body could be returned for burial within 24 hours. Study 2: in 5–10% of cases of sudden unexplained death in childhood and sudden unexplained death in infants, the final cause of death is determined by routine histological sampling of macroscopically normal organs, predominantly the heart and lungs, and in this group routine histological sampling therefore remains an important aspect of investigation. In contrast, routine histological examination of macroscopically normal organs rarely (< 0.5%) provides the cause of death in fetal cases, making LIA and NIA approaches potentially highly applicable.
Limitations:
A key limitation of the empirical research is that it is hypothetical. Further research is required to determine actual uptake. Furthermore, because of the retrospective nature of the autopsy data set, findings regarding the likely contribution of organ sampling to final diagnosis are based on extrapolation of findings from historical autopsies, and prospective data collection is required to validate the conclusions.
Conclusions:
LIA is viable and acceptable (except for unexplained deaths), and likely to increase uptake. Further health economic, performance and implementation studies are required to determine the optimal service configuration required to offer this as routine clinical care.
Funding:
The National Institute for Health Research Health Technology Assessment programme.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. Background and overview ofthe research
- Introduction
- Autopsy examination as a component of investigation of prenatal and paediatric death
- Functions of perinatal and paediatric autopsy
- Contribution of the perinatal and paediatric autopsy to clinical care
- Factors influencing the value of the perinatal and paediatric autopsy
- Indications of particular value and of limited value
- Classification systems of perinatal and paediatric deaths and their issues
- Consent process
- Consent requirements for autopsy
- Practical aspects of the standard autopsy examination
- Limitations of autopsy examination
- The autopsy report
- Prevalence of perinatal autopsy and reasons for consent refusal
- New developments in autopsy investigation: less invasive autopsy approaches
- Importance of research on less invasive autopsy
- Research aims
- Components of the research programme
- Chapter 2. Evidence synthesis: a systematic review of factors affecting uptake of autopsy examination
- Chapter 3. Empirical research with key stakeholders: design and methods
- The research team and advisory group
- Ethics approval
- Overall study design
- Substudy 1: mixed-methods study with bereaved parents to determine acceptability and likely uptake of less invasive autopsy
- Substudy 2: interview study with health professionals and HM Coroners
- Substudy 3: interview and focus group study with religious leaders and community members
- Patient and public involvement
- Chapter 4. Results: mixed-methods study with bereaved parents to determine acceptability and likely uptake of less invasive autopsy
- Chapter 5. Interview study with health professionals and HM Coroners
- Chapter 6. Results: interview and focus group study with religious leaders and community members
- Chapter 7. Retrospective analysis of existing autopsy data
- Chapter 8. Discussion, including strengths and limitations, implications for practice, future research and conclusion
- Acknowledgements
- References
- Appendix 1. Summary of papers detailing factors affecting uptake of autopsy examination
- Glossary
- List of abbreviations
About the Series
Article history
The research reported in this issue of the journal was funded by the HTA programme as project number 14/168/02. The contractual start date was in May 2016. The draft report began editorial review in June 2018 and was accepted for publication in February 2019. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.
Declared competing interests of authors
none
Disclaimer
This report contains transcripts of interviews conducted in the course of the research and contains language that may offend some readers.
Last reviewed: June 2018; Accepted: February 2019.
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