Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study

Maixenchs, María; Anselmo, Rui; Zielinski-Gutiérrez, Emily; Odhiambo, Frank; Akello, Clarah; Ondire, Maureen; Zaidi, Shahida; Soofi, Sajid Bashir; Bhutta, Zulfiqar A; Diarra, Kounandji; Djitèye, Mahamane; Dembélé, Roukiatou; Sow, Samba O.; Minsoko, Pamela Cathérine Angoissa; Agnandji, Selidji Todagbé; Lell, Bertrand; Ismail, Mamudo R.; Carrilho, Carla; Ordi, Jaume; Menéndez, Clara; Bassat, Quique; Munguambe, Khátia

doi:10.1371/journal.pmed.1002172

Cited by 77 publications

(126 citation statements)

References 32 publications

(41 reference statements)

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“…In recent years, different approaches based only on minimally invasive tissue sampling [30–32] have been proposed as potential substitutes for CDA. This MIA is expected to be more acceptable to the relatives of the deceased person than the CDA, especially in rural areas, where most deaths still occur in low-income countries [33]. In addition, the MIA procedure likely involves less risk than the CDA for health personnel, something of critical importance when faced with highly contagious infectious diseases.…”

Section: Discussionmentioning

confidence: 99%

Validity of a Minimally Invasive Autopsy for Cause of Death Determination in Adults in Mozambique: An Observational Study

et al. 2016

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BackgroundThere is an urgent need to identify tools able to provide reliable information on the cause of death in low-income regions, since current methods (verbal autopsy, clinical records, and complete autopsies) are either inaccurate, not feasible, or poorly accepted. We aimed to compare the performance of a standardized minimally invasive autopsy (MIA) approach with that of the gold standard, the complete diagnostic autopsy (CDA), in a series of adults who died at Maputo Central Hospital in Mozambique.Methods and FindingsIn this observational study, coupled MIAs and CDAs were performed in 112 deceased patients. The MIA analyses were done blindly, without knowledge of the clinical data or the results of the CDA. We compared the MIA diagnosis with the CDA diagnosis of cause of death.CDA diagnoses comprised infectious diseases (80; 71.4%), malignant tumors (16; 14.3%), and other diseases, including non-infectious cardiovascular, gastrointestinal, kidney, and lung diseases (16; 14.3%). A MIA diagnosis was obtained in 100/112 (89.2%) cases. The overall concordance between the MIA diagnosis and CDA diagnosis was 75.9% (85/112). The concordance was higher for infectious diseases and malignant tumors (63/80 [78.8%] and 13/16 [81.3%], respectively) than for other diseases (9/16; 56.2%). The specific microorganisms causing death were identified in the MIA in 62/74 (83.8%) of the infectious disease deaths with a recognized cause.The main limitation of the analysis is that both the MIA and the CDA include some degree of expert subjective interpretation.ConclusionsA simple MIA procedure can identify the cause of death in many adult deaths in Mozambique. This tool could have a major role in improving the understanding and surveillance of causes of death in areas where infectious diseases are a common cause of mortality.

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Section: Discussionmentioning

confidence: 99%

Validity of a Minimally Invasive Autopsy for Cause of Death Determination in Adults in Mozambique: An Observational Study

et al. 2016

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“…To date, only a few small studies have been conducted in high‐income countries (UK and Belgium) to assess attitudes of bereaved parents towards less invasive autopsy, with findings suggesting a potential increase in uptake (18–99%). Research on the hypothetical acceptability of MIA has also been conducted in low‐ and middle‐income countries, including countries in Africa and Asia, where acceptability of MIA on a relative was 73% . Successful implementation of less invasive methods will require evaluation to assess performance and acceptability among key stakeholders.…”

Section: Introductionmentioning

confidence: 99%

“…Research on the hypothetical acceptability of MIA has also been conducted in low-and middleincome countries, including countries in Africa and Asia, where acceptability of MIA on a relative was 73%. 17 Successful implementation of less invasive methods will require evaluation to assess performance and acceptability among key stakeholders. The aim of this study was to answer the question 'are less invasive methods of autopsy acceptable to bereaved parents, likely to increase uptake and if so, by how much?…”

Section: Introductionmentioning

confidence: 99%

Availability of less invasive prenatal, perinatal and paediatric autopsy will improve uptake rates: a mixed‐methods study with bereaved parents

Lewis

Riddington

Hill

et al. 2019

BJOG

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Objective To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake. Design Mixed methods study. Setting Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations. Sample Eight hundred and fifty‐nine surveys and 20 interviews with bereaved parents. Methods Cross‐sectional survey and qualitative semi‐structured telephone interviews. Main outcome measures Likely uptake, preferences, factors impacting decision‐making, views on different autopsy methods. Results Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy ( MIA ), non‐invasive autopsy ( NIA ) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA . Regarding parental preferences, 45.5% preferred MIA , 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35–0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy. Conclusion Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care. Tweetable abstract Mixed methods UK study finds less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience.

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“…A novel approach, minimally invasive tissue sampling (MITS), builds on postmortem needle biopsies of tissue that have been in occasional use for disease-specific surveillance and outbreak investigations for decades. Innovative approaches have yielded rapid recognition of MITS as a comprehensive tool to obtain postmortem samples in challenging settings, demonstrating agreement with complete diagnostic autopsy in some 70–90% of cases 9 , 10 . Preliminary results of a research project to validate MITS against gold standard methods in Mozambique and Brazil have shown that MITS has high agreement with, and can reliably substitute for, full autopsy, particularly for infectious causes of death 11 .…”

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confidence: 99%

Precisely Tracking Childhood Death

Farag

Koplan

Breiman³

et al. 2017

The American Society of Tropical Medicine and Hygiene

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Abstract.Little is known about the specific causes of neonatal and under-five childhood death in high-mortality geographic regions due to a lack of primary data and dependence on inaccurate tools, such as verbal autopsy. To meet the ambitious new Sustainable Development Goal 3.2 to eliminate preventable child mortality in every country, better approaches are needed to precisely determine specific causes of death so that prevention and treatment interventions can be strengthened and focused. Minimally invasive tissue sampling (MITS) is a technique that uses needle-based postmortem sampling, followed by advanced histopathology and microbiology to definitely determine cause of death. The Bill & Melinda Gates Foundation is supporting a new surveillance system called the Child Health and Mortality Prevention Surveillance network, which will determine cause of death using MITS in combination with other information, and yield cause-specific population-based mortality rates, eventually in up to 12–15 sites in sub-Saharan Africa and south Asia. However, the Gates Foundation funding alone is not enough. We call on governments, other funders, and international stakeholders to expand the use of pathology-based cause of death determination to provide the information needed to end preventable childhood mortality.

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Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study

Cited by 77 publications

References 32 publications

Validity of a Minimally Invasive Autopsy for Cause of Death Determination in Adults in Mozambique: An Observational Study

Validity of a Minimally Invasive Autopsy for Cause of Death Determination in Adults in Mozambique: An Observational Study

Availability of less invasive prenatal, perinatal and paediatric autopsy will improve uptake rates: a mixed‐methods study with bereaved parents

Precisely Tracking Childhood Death

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