History of the Avon Longitudinal Study of Parents and Children , c.1980-2000

Annotated and edited transcript of a Witness Seminar held on 24 May 2011. Introduction by Professor David Gordon, World Federation for Medical Education.Annotated and edited transcript of a Witness Seminar held on 24 May 2011. Introduction by Professor David Gordon, World Federation for Medical Education.Annotated and edited transcript of a Witness Seminar held on 24 May 2011. Introduction by Professor David Gordon, World Federation for Medical Education.Annotated and edited transcript of a Witness Seminar held on 24 May 2011. Introduction by Professor David Gordon, World Federation for Medical Education.The Avon Longitudinal Survey of Parents and Children (ALSPAC) arose from a proposal in the mid-1980s to design a cohort study in Europe which concentrated on the health of children. The UK-side of this was developed in the former county of Avon and the study has followed more than 14000 children, due between April 1991 and December 1992, from their mothers' pregnancies onwards. A vast amount of data has been collected on health, lifestyle, and environment as well as biological samples of urine, blood and DNA. This has been used to establish genetic and environmental determinants of development and health. With an introduction by Professor David Gordon, this volume addresses the origin and development of ALSPAC, the problems of funding such a major study, the variety of methodologies employed, and the ethical questions associated with the project. Contributors include several of the major scientists involved with ALSPAC including Professor Jean Golding, Scientific and Executive Director of the study until December 2005, as well as clinical scientists, epidemiologists, members of the ethics committee, field workers and study parents.https://qmro.qmul.ac.uk/xmlui/handle/123456789/272

Exploring acceptability and feasibility of a wearable device to facilitate home phototherapy treatment for newborn jaundice in rural Scotland: an interpretive description study.

Jaundice is a common condition in newborn infants, turning skin colour yellow due to the build-up of bilirubin. Internationally, jaundice continues to result in newborn infants' hospital admission, forcing separation of family units at the pivotal point for breastfeeding initiation and bonding. The aim of this research was to explore - with healthcare professionals and parents - the acceptability and feasibility of a wearable device to facilitate home phototherapy treatment for newborn jaundice in rural Scotland. The research was undertaken through qualitative interviews, using Interpretive Description to accommodate various perspectives influencing acceptability and feasibility of a wearable device to facilitate home phototherapy treatment. Participants were recruited via purposive sampling from one NHS board in Scotland. Semi- structured interviews were used with parental dyads (n=4) and mothers (n=6). Healthcare professionals (n=9) were recruited onto two focus groups conducted in different geographical locations (an urban and regional hospital) in NHS Grampian. The Framework approach was used to thematically analyse the data. Miranda Fricker's concept of epistemic injustice, which proposes inequity due to unequal power dynamics between people or systems, provided a theoretical perspective to interpret key findings. The study found that, although parents expressed a desire for wearable phototherapy devices to facilitate breastfeeding and comfort for the newborn infant, they primarily wanted home-based phototherapy treatment. Study participants described a 'one-size-fits-all' focus for newborn jaundice, centred around quickly reducing serum bilirubin levels. Furthermore, healthcare professionals assumed that parents would agree that the use of overhead phototherapy devices was worthwhile despite the distress to mothers and newborn infants, because it was an effective means of lowering serum bilirubin levels and facilitating timely discharge from care. Parents perceived postnatal care of newborn infants with jaundice to be paternalistic, which was interpreted by parents as being evidence of healthcare professionals' lack of trust in their parental capabilities. Moreover, healthcare professionals did not trust their clinical judgement to assess and manage newborn jaundice, due to the fear that they would be held clinically accountable for serum bilirubin levels not improving. This affected healthcare professionals' ability to trust parental capabilities. As a result, the rural aspect of the study became inconsequential. The study concluded that parents were willing to compromise on size, functions, and usability of phototherapy devices to facilitate home-based phototherapy treatment in the short term. However, epistemic injustice towards parents and midwives impacted shared decision-making within care teams, which in turn obstructed the acceptability and feasibility of both home-based phototherapy in general, and more specifically a wearable device that could facilitate home-based phototherapy

High frequency detection of Toxoplasma gondii DNA in human neonatal tissue from Libya

Background: Toxoplasma gondii is a parasite that causes significant disease in humans. Toxoplasmosis is normally asymptomatic, unless associated with congenital transmission, or in immunocompromised people. Congenital transmission generally occurs at low frequencies. In this study, we use PCR to investigate possible congenital transmission of T. gondii during pregnancy in a cohort of mothers from Libya. Methods: Two hundred and seventy two pregnant women (producing 276 neonates) were recruited to obtain umbilical cord tissue from their neonates at birth. DNA was extracted from umbilical cord tissue and tested for T. gondii DNA using two specific PCR protocols based on the sag 1 and sag 3 genes. Results: Toxoplasma gondii DNA was detected in the umbilical cord DNA from 27 of the 276 neonates giving a prevalence of 9.9% (95% CI: 6.8-13.9%). Compared with more commonly reported rates of congenital transmission of 0.1% of live births, this is high. There was no association of infection with unsuccessful pregnancy. Conclusions: This study shows a high frequency presence of T. gondii DNA associated with neonatal tissue at birth in this cohort of 276 neonates from Libya. Although PCR cannot detect living parasites, there is the possibility that this indicates a higher than usual frequency of congenital transmission

Population Health Metrics Research Consortium gold standard verbal autopsy validation study: design, implementation, and development of analysis datasets

Background: Verbal autopsy methods are critically important for evaluating the leading causes of death in populations without adequate vital registration systems. With a myriad of analytical and data collection approaches, it is essential to create a high quality validation dataset from different populations to evaluate comparative method performance and make recommendations for future verbal autopsy implementation. This study was undertaken to compile a set of strictly defined gold standard deaths for which verbal autopsies were collected to validate the accuracy of different methods of verbal autopsy cause of death assignment.Methods: Data collection was implemented in six sites in four countries: Andhra Pradesh, India; Bohol, Philippines; Dar es Salaam, Tanzania; Mexico City, Mexico; Pemba Island, Tanzania; and Uttar Pradesh, India. The Population Health Metrics Research Consortium (PHMRC) developed stringent diagnostic criteria including laboratory, pathology, and medical imaging findings to identify gold standard deaths in health facilities as well as an enhanced verbal autopsy instrument based on World Health Organization (WHO) standards. A cause list was constructed based on the WHO Global Burden of Disease estimates of the leading causes of death, potential to identify unique signs and symptoms, and the likely existence of sufficient medical technology to ascertain gold standard cases. Blinded verbal autopsies were collected on all gold standard deaths.Results: Over 12,000 verbal autopsies on deaths with gold standard diagnoses were collected (7,836 adults, 2,075 children, 1,629 neonates, and 1,002 stillbirths). Difficulties in finding sufficient cases to meet gold standard criteria as well as problems with misclassification for certain causes meant that the target list of causes for analysis was reduced to 34 for adults, 21 for children, and 10 for neonates, excluding stillbirths. To ensure strict independence for the validation of methods and assessment of comparative performance, 500 test-train datasets were created from the universe of cases, covering a range of cause-specific compositions.Conclusions: This unique, robust validation dataset will allow scholars to evaluate the performance of different verbal autopsy analytic methods as well as instrument design. This dataset can be used to inform the implementation of verbal autopsies to more reliably ascertain cause of death in national health information systems

Iodine supplementation for women during the preconception, pregnancy and postpartum period

Background Iodine is an essential nutrient required for the biosynthesis of thyroid hormones, which are responsible for regulating growth, development and metabolism. Iodine requirements increase substantially during pregnancy and breastfeeding. If requirements are not met during these periods, the production of thyroid hormones may decrease and be inadequate for maternal, fetal and infant needs. The provision of iodine supplements may help meet the increased iodine needs during pregnancy and the postpartum period and prevent or correct iodine deficiency and its consequences. Objectives To assess the benefits and harms of supplementation with iodine, alone or in combination with other vitamins and minerals, for women in the preconceptional, pregnancy or postpartum period on their and their children's outcomes. Search methods We searched Cochrane Pregnancy and Childbirth's Trials Register (14 November 2016), and the WHO International Clinical Trials Registry Platform (ICTRP) (17 November 2016), contacted experts in the field and searched the reference lists of retrieved studies and other relevant papers. Selection criteria Randomized and quasi‐randomized controlled trials with randomisation at either the individual or cluster level comparing injected or oral iodine supplementation (such as tablets, capsules, drops) during preconception, pregnancy or the postpartum period irrespective of iodine compound, dose, frequency or duration. Data collection and analysis Two review authors independently assessed trial eligibility, risk of bias, extracted data and conducted checks for accuracy. We used the GRADE approach to assess the quality of the evidence for primary outcomes. We anticipated high heterogeneity among trials, and we pooled trial results using random‐effects models and were cautious in our interpretation of the pooled results. Main results We included 14 studies and excluded 48 studies. We identified five ongoing or unpublished studies and two studies are awaiting classification. Eleven trials involving over 2700 women contributed data for the comparisons in this review (in three trials, the primary or secondary outcomes were not reported). Maternal primary outcomes Iodine supplementation decreased the likelihood of the adverse effect of postpartum hyperthyroidism by 68% (average risk ratio (RR) 0.32; 95% confidence interval (CI) 0.11 to 0.91, three trials in mild to moderate iodine deficiency settings, 543 women, no statistical heterogeneity, low‐quality evidence) and increased the likelihood of the adverse effect of digestive intolerance in pregnancy by 15 times (average RR 15.33; 95% CI 2.07 to 113.70, one trial in a mild‐deficiency setting, 76 women, very low‐quality evidence). There were no clear differences between groups for hypothyroidism in pregnancy or postpartum (pregnancy: average RR 1.90; 95% CI 0.57 to 6.38, one trial, 365 women, low‐quality evidence, and postpartum: average RR 0.44; 95% CI 0.06 to 3.42, three trials, 540 women, no statistical heterogeneity, low‐quality evidence), preterm birth (average RR 0.71; 95% CI 0.30 to 1.66, two trials, 376 women, statistical heterogeneity, low‐quality evidence) or the maternal adverse effects of elevated thyroid peroxidase antibodies (TPO‐ab) in pregnancy or postpartum (average RR 0.95; 95% CI 0.44 to 2.07, one trial, 359 women, low‐quality evidence, average RR 1.01; 95% CI 0.78 to 1.30, three trials, 397 women, no statistical heterogeneity, low‐quality evidence), or hyperthyroidism in pregnancy (average RR 1.90; 95% CI 0.57 to 6.38, one trial, 365 women, low‐quality evidence). All of the trials contributing data to these outcomes took place in settings with mild to moderate iodine deficiency. Infant/child primary outcomes Compared with those who did not receive iodine, those who received iodine supplements had a 34% lower likelihood of perinatal mortality, however this difference was not statistically significant (average RR 0.66; 95% CI 0.42 to 1.03, two trials, 457 assessments, low‐quality evidence). All of the perinatal deaths occurred in one trial conducted in a severely iodine‐deficient setting. There were no clear differences between groups for low birthweight (average RR 0.56; 95% CI 0.26 to 1.23, two trials, 377 infants, no statistical heterogeneity, low‐quality evidence), neonatal hypothyroidism/elevated thyroid‐stimulating hormone (TSH) (average RR 0.58; 95% CI 0.11 to 3.12, two trials, 260 infants, very low‐quality evidence) or the adverse effect of elevated neonatal thyroid peroxidase antibodies (TPO‐ab) (average RR 0.61; 95% CI 0.07 to 5.70, one trial, 108 infants, very low‐quality evidence). All of the trials contributing data to these outcomes took place in areas with mild to moderate iodine deficiency. No trials reported on hypothyroidism/elevated TSH or any adverse effect beyond the neonatal period. Authors' conclusions There were insufficient data to reach any meaningful conclusions on the benefits and harms of routine iodine supplementation in women before, during or after pregnancy. The available evidence suggested that iodine supplementation decreases the likelihood of postpartum hyperthyroidism and increases the likelihood of the adverse effect of digestive intolerance in pregnancy ‐ both considered potential adverse effects. We considered evidence for these outcomes low or very low quality, however, because of study design limitations and wide confidence intervals. In addition, due to the small number of trials and included women in our meta‐analyses, these findings must be interpreted with caution. There were no clear effects on other important maternal or child outcomes though these findings must also be interpreted cautiously due to limited data and low‐quality trials. Additionally, almost all of the evidence came from settings with mild or moderate iodine deficiency and therefore may not be applicable to settings with severe deficiency. More high‐quality randomised controlled trials are needed on iodine supplementation before, during and after pregnancy on maternal and infant/child outcomes. However, it may be unethical to compare iodine to placebo or no treatment in severe deficiency settings. Trials may also be unfeasible in settings where pregnant and lactating women commonly take prenatal supplements with iodine. Information is needed on optimal timing of initiation as well as supplementation regimen and dose. Future trials should consider the outcomes in this review and follow children beyond the neonatal period. Future trials should employ adequate sample sizes, assess potential adverse effects (including the nature and extent of digestive intolerance), and be reported in a way that allows assessment of risk of bias, full data extraction and analysis by the subgroups specified in this review