3
views
0
recommends
+1 Recommend
1 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found

      Minimally invasive autopsy for fetuses and children based on a combination of post-mortem MRI and endoscopic examination: a feasibility study

      Read this article at

      ScienceOpenPublisherPMC
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          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.

          Related collections

          Most cited references110

          • Record: found
          • Abstract: not found
          • Article: not found

          Using thematic analysis in psychology

            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration

            Systematic reviews and meta-analyses are essential to summarise evidence relating to efficacy and safety of healthcare interventions accurately and reliably. The clarity and transparency of these reports, however, are not optimal. Poor reporting of systematic reviews diminishes their value to clinicians, policy makers, and other users. Since the development of the QUOROM (quality of reporting of meta-analysis) statement—a reporting guideline published in 1999—there have been several conceptual, methodological, and practical advances regarding the conduct and reporting of systematic reviews and meta-analyses. Also, reviews of published systematic reviews have found that key information about these studies is often poorly reported. Realising these issues, an international group that included experienced authors and methodologists developed PRISMA (preferred reporting items for systematic reviews and meta-analyses) as an evolution of the original QUOROM guideline for systematic reviews and meta-analyses of evaluations of health care interventions. The PRISMA statement consists of a 27-item checklist and a four-phase flow diagram. The checklist includes items deemed essential for transparent reporting of a systematic review. In this explanation and elaboration document, we explain the meaning and rationale for each checklist item. For each item, we include an example of good reporting and, where possible, references to relevant empirical studies and methodological literature. The PRISMA statement, this document, and the associated website (www.prisma-statement.org/) should be helpful resources to improve reporting of systematic reviews and meta-analyses.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              Member Checking

              The trustworthiness of results is the bedrock of high quality qualitative research. Member checking, also known as participant or respondent validation, is a technique for exploring the credibility of results. Data or results are returned to participants to check for accuracy and resonance with their experiences. Member checking is often mentioned as one in a list of validation techniques. This simplistic reporting might not acknowledge the value of using the method, nor its juxtaposition with the interpretative stance of qualitative research. In this commentary, we critique how member checking has been used in published research, before describing and evaluating an innovative in-depth member checking technique, Synthesized Member Checking. The method was used in a study with patients diagnosed with melanoma. Synthesized Member Checking addresses the co-constructed nature of knowledge by providing participants with the opportunity to engage with, and add to, interview and interpreted data, several months after their semi-structured interview.
                Bookmark

                Author and article information

                Contributors
                Journal
                Health Technology Assessment
                Health Technol Assess
                National Institute for Health and Care Research
                1366-5278
                2046-4924
                August 2019
                August 2019
                : 23
                : 46
                : 1-104
                Affiliations
                [1 ]North East Thames Regional Genetics Service, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
                [2 ]Genetics and Genomic Medicine, University College London Great Ormond Street Institute of Child Health, London, UK
                [3 ]Department of Histopathology, Great Ormond Street Hospital for Children NHS Foundation Trust and Institute of Child Health/University College London, London, UK
                [4 ]Department of Psychological Services, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
                [5 ]Department of Radiology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
                [6 ]Antenatal Results and Choices, London, UK
                [7 ]Institute of Child Health; Population, Policy and Practice, University College London, London, UK
                [8 ]Comprehensive Clinical Trials Unit, University College London, London, UK
                Article
                10.3310/hta23460
                6732714
                31461397
                97349f71-ded3-46ab-9aa8-cfa482e2bd58
                © 2019

                Free to read

                http://www.nationalarchives.gov.uk/doc/non-commercial-government-licence/non-commercial-government-licence.htm

                History

                Comments

                Comment on this article