Authors' objectives: The death of a baby or child, either during the pregnancy (miscarriage/stillbirth), after birth (infant death), following termination of pregnancy for abnormality (ToP), or in childhood, leaves parents with important questions such as why did this happen?, what are the chances of it happening again? and will it affect anyone else in the family?. For many of these questions, answers can only be provided by carrying out a post-mortem or autopsy examination, which gives answers in 30-50% of cases. Autopsy often involves a large procedure like an operation in which all parts of the body can be examined in detail, including the internal organs, which requires a large incision to be made on the body. For a range of reasons, including moral and religious, the majority of parents do not currently agree to an autopsy being carried out: the most common reason given is dislike of the large incision being made on the body and feeling that the child has suffered enough, in addition to concerns regarding organ removal and retention. Recently, it has been shown that the information needed to answer the parents' questions can be obtained without needing a standard autopsy. This alternative approach involves careful examination of the medical notes, performing a special type of imaging called MRI (like an detailed X Ray) of the baby, and carrying out tests that do not require any cuts to be made to the baby, such as blood tests and examining the placenta for example. This approach has been shown to obtain the necessary information in up to 90% of cases, depending on the circumstances, but is not suitable for ALL types of death, since in some cases further special tests are needed which require tissue samples. Instead of a large incision, it is now possible to take these samples by using a keyhole surgery approach through a much smaller incision. The aim of this study is therefore to work out how many, and which types of patient, may be suitable for this alternative autopsy approach, and most importantly to find out how parents and families feel about it, specifically whether they feel it would be more acceptable than standard autopsy. If so, the data obtained would be used to decide whether a large study comparing the standard to the new approach is required, and how such a large study should be performed.

Project Status: Completed

URL for project: http://www.nets.nihr.ac.uk/projects/hta/1416802

Year Published: 2019

URL for published report: https://www.journalslibrary.nihr.ac.uk/programmes/hta/1416802#/

English language abstract: An English language summary is available

Publication Type: Not Assigned

Country: England, United Kingdom

Organisation Name: NIHR Health Technology Assessment programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk

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