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Supervisors: Dr Owen Arthurs, Dr Celine Lewis
Less invasive autopsies for early pregnancy loss: Parental and healthcare professionals’ views and expectations
Background:
The loss of a baby before 24 weeks of pregnancy (“a miscarriage”) is extremely common - affecting 250,000 women per year in the UK. Discovering why it has happened improves the psychological burden of the grieving process, and helps manage future pregnancies better.
A standard autopsy is currently the best test to help understand reasons for the pregnancy loss, however it frequently involves making large cuts to the baby’s body which parents find unacceptable (1). Although imaging techniques using MRI allow for a non-invasive assessment of a child’s body after death (2), this test is not detailed enough for small babies after miscarriage (3).
A novel imaging test - pioneered at Great Ormond Street Hospital (GOSH) - called micro-focus computed tomography (micro-CT) has been developed to address this issue (4). It can image small babies (as early as 7 weeks of pregnancy) with a high level of detail, and with a similar degree of accuracy as a standard autopsy (98% agreement) (5). Micro-CT is now part of a routine ‘less invasive autopsy’ service offered at GOSH, where we have performed over 300 cases, with uptake increasing each month.
Whilst we have extensive knowledge and experience in mixed methods studies of parents’ views of less invasive autopsy in general, we desperately need in-depth research assessing the views and experiences of parents offered this specific test to help develop it further. In order to expand micro-CT services to more parents, we need to identify the best practices for consenting, delivering results, managing and understanding parental expectations and those of their healthcare professionals in an integrated patient-based approach.
Aims/Objectives:
The aim of this PhD study is to explore key stakeholders views and experiences of micro-CT, and identify the challenges and barriers to widespread implementation, uniquely available with the imaging service and patient population referred to UCL GOS ICH. The study objectives are:
1. Conduct a systematic review to look at bereaved parents’ experiences of less invasive (imaging-based) autopsies;
2. Conduct a cross-sectional quantitative survey with women and partners who have experienced miscarriage (through The Miscarriage Association) to explore preferences, acceptability and likely uptake of micro-CT;
3. Conduct qualitative interviews with women and partners who have been offered micro-CT to explore their views and experiences, motivations and concerns;
4. Conduct qualitative interviews with health professionals who offer micro-CT and/or deliver micro-CT results to understand their views and experiences, as well as identify the potential challenges and barriers (logistical, training, cost etc) to implementing the service more widely.
Methods:
This is a mixed-methods study employing qualitative and quantitative methods. The student will gain experience of conducting semi-structured interviews and qualitative data analysis. The student will also gain experience in survey design and statistical analysis. The research group has extensive experience in this type of cutting-edge research, with numerous recent high impact publications (BMJ, Lancet, BJOG, Health Technology Assessment).
Timeline:
Year 1: Study set-up (NHS Ethics and R&D), systematic review;
Year 2: survey design and dissemination; qualitative interviews;
Year 3: analysis and write-up.
References:
1. Lewis C, Hill M, Arthurs OJ, Hutchinson C, Chitty LS, Sebire N. Factors Affecting Uptake of Postmortem Examination in the Prenatal, Perinatal and Paediatric Setting; a Systematic Review. BJOG. 2018;125(2):172-81.
2. Arthurs OJ, Bevan C, Sebire NJ. Less invasive investigation of perinatal death. BMJ. 2015;351:h3598.
3. Lewis C, Hutchinson JC, Riddington M, Hill M, Arthurs OJ, Fisher J, Wade A, Doré CJ, Chitty LS, Sebire NJ. Minimally invasive autopsy for fetuses and children based on a combination of post-mortem MRI and endoscopic examination: a feasibility study. Health Technol Assess. 2019 Aug;23(46):1-104. doi: 10.3310/hta23460.
4. Shelmerdine SC, Hutchinson JC, Arthurs OJ, Sebire NJ. Latest developments in post-mortem fetal Imaging. Prenatal diagnosis. 2020. 40(1):28-37.
5. Hutchinson JC, Kang X, Shelmerdine SC, Segers V, Lombardi CM, Cannie MM, et al. Post mortem microfocus computed tomography for early gestation fetuses: a validation study against conventional autopsy. Am J Obstet Gynecol. 2018.218(4):445:e1-445.e12.
