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A post-mortem population survey on foetal-infantile end-of-life decisions : a research protocol

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Abstract
Background: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation - 1 year) including both neonates and stillborns, are nonexistent However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap. Methods: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained. Discussion: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.
Keywords
End-of-life decisions, Neonates, Stillbirths, Termination of pregnancy, Mortality follow-back survey, Population based, NEONATAL INTENSIVE-CARE, ULTRASOUND DIAGNOSIS, TERMINATION, ANOMALIES, PREGNANCY, FLANDERS, BELGIUM, NETHERLANDS, MANAGEMENT, EUTHANASIA

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Citation

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Chicago
Dombrecht, Laure, Kim Beernaert, Ellen Roets, Kenneth Chambaere, Filip Cools, Linde Goossens, Gunnar Naulaers, Luc De Catte, Joachim Cohen, and Luc Deliens. 2018. “A Post-mortem Population Survey on Foetal-infantile End-of-life Decisions : a Research Protocol.” Bmc Pediatrics 18.
APA
Dombrecht, L., Beernaert, K., Roets, E., Chambaere, K., Cools, F., Goossens, L., Naulaers, G., et al. (2018). A post-mortem population survey on foetal-infantile end-of-life decisions : a research protocol. BMC PEDIATRICS, 18.
Vancouver
1.
Dombrecht L, Beernaert K, Roets E, Chambaere K, Cools F, Goossens L, et al. A post-mortem population survey on foetal-infantile end-of-life decisions : a research protocol. BMC PEDIATRICS. 2018;18.
MLA
Dombrecht, Laure, Kim Beernaert, Ellen Roets, et al. “A Post-mortem Population Survey on Foetal-infantile End-of-life Decisions : a Research Protocol.” BMC PEDIATRICS 18 (2018): n. pag. Print.
@article{8573806,
  abstract     = {Background: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period ({\textrangle} 22 weeks of gestation - 1 year) including both neonates and stillborns, are nonexistent However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap. 
Methods: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained. 
Discussion: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.},
  articleno    = {260},
  author       = {Dombrecht, Laure and Beernaert, Kim and Roets, Ellen and Chambaere, Kenneth and Cools, Filip and Goossens, Linde and Naulaers, Gunnar and De Catte, Luc and Cohen, Joachim and Deliens, Luc},
  issn         = {1471-2431},
  journal      = {BMC PEDIATRICS},
  language     = {eng},
  pages        = {9},
  title        = {A post-mortem population survey on foetal-infantile end-of-life decisions : a research protocol},
  url          = {http://dx.doi.org/10.1186/s12887-018-1218-4},
  volume       = {18},
  year         = {2018},
}

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