Research priorities of women at risk for preterm birth: findings and a call to action.

BACKGROUND:Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. METHODS:We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences. RESULTS:Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions. CONCLUSIONS:These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities

Decision aids to improve informed decision-making in pregnancy care: a systematic review

Rapid development in health care has resulted in an increasing number of screening and treatment options. Consequently, there is an urgency to provide people with relevant information about benefits and risks of healthcare options in an unbiased way. Decision aids help people to make decisions by providing unbiased non-directive research evidence about all treatment options. To determine the effectiveness of decision aids to improve informed decision making in pregnancy care. We searched MEDLINE (1953-2011), EMBASE (1980-2011), CENTRAL (CENTRAL, the Cochrane Library; 2011, Issue 4), Psycinfo (1806-2011) and Research Registers of ongoing trials (www.clinicaltrials.gov, www.controlled-trials.com). We included randomised controlled trials comparing decision aids in addition to standard care. The study population needed to be pregnant women making actual decisions concerning their pregnancy. Two independent researchers extracted data on quality of the randomised controlled trial (GRADE criteria), quality of the decision aid (IPDAS criteria), and outcome measures. Data analysis was undertaken by assessing group differences at first follow up after the interventions. Ten randomised controlled trials could be included. Pooled analyses showed that decision aids significantly increased knowledge, (weighted mean difference 11.06, 95% confidence interval 4.85-17.27), decreased decisional conflict scores (weighted mean difference -3.66, 95% confidence interval -6.65 to -0.68) and decreased anxiety (weighted mean difference -1.56, 95% confidence interval -2.75 to -0.43). Our systematic review showed the positive effect of decision aids on informed decision making in pregnancy care. Future studies should focus on increasing the uptake of decision aids in clinical practice by identifying barriers and facilitators to implementatio

A study of event-related electrocortical oscillatory dynamics associated with cued motor-response inhibition during performance of the Go/NoGo task within a sample of prenatally alcohol-exposed children and age-matched controls

Fetal alcohol spectrum disorders (FASDs) are a spectrum of disorders that occur due to prenatal alcohol exposure (PAE). Response inhibition refers to the ability to inhibit/suppress a prepotent behavioural tendency set in motion during an experimental task. Our research explored neocortical processing in heavy-exposed children from Cape Town, South Africa, performing the Go/NoGo response inhibition task. We utilised event-related electroencephalographic methodologies to examine event-related potentials (ERP) and eventrelated changes in induced oscillatory power - event-related desynchronisation (ERD)/eventrelated synchronisation (ERS). Across visual and auditory Go/NoGo tasks, we observed equivalent levels of inhibitory control between heavy-exposed (HE) participants and normally-developing controls; however, HEs demonstrated significantly slower reaction times relative to the control group. In an auditory ERP study, we observed a number of alcohol-related changes in ERP waveform morphology, such as decreased P2 amplitude, reduced P3 amplitude, and longer P3 peak latency. In addition, within the HE group, late in the trials, a slow-wave component was observed in both experimental conditions. A significant difference in N2 amplitude across conditions that has consistently been observed in normally-developing samples was not observed in the HE group. We extended previous research findings in the visual domain by analysing induced oscillatory responses. We observed within the normally-developing sample: (1) in both experimental conditions, a frontal induced beta-band ERS related to decision-making; and (2) in the NoGo-condition, a frontal gamma-band ERS related to cognitive-control. Within the HE group, the beta-ERS was not observed in either of the experimental conditions, neither was the gamma-ERS observed in the NoGo-condition. Frontal induced beta-power was predictive of performance accuracy in the HE group, but not in the control group. The observed alcohol-related effects were not explained and/or mediated by IQ (WISC-IQ), socio-economic circumstances, comorbid ADHD, or teratogenic effects related to postnatal lead exposure and prenatal cigarette-smoke exposure. Our results point to alterations in scalp-measured event-related neocortical oscillatory dynamics and slower processing of task demands due to heavy PAE. These alcohol-related effects are observable on ERP component measures, primarily related to conflict-monitoring and attention-based processing. PAE also affects induced classes of neocortical oscillatory dynamics related to decision-making and cognitive-control processes required to inhibit a prepotent motor-response

Detail-oriented cognitive style and social communicative deficits, within and beyond the autism spectrum: independent traits that grow into developmental interdependence

At the heart of debates over underlying causes of autism is the "Kanner hypothesis" that autistic deficits in social reciprocity, and a cognitive/perceptual 'style' favouring detail-oriented cognition, co-vary in autistic individuals. A separate line of work indicates these two domains are normally distributed throughout the population, with autism representing an extremity. This realisation brings the Kanner debate into the realm of normative co-variation, providing more ways to test the hypothesis, and insights into typical development; for instance, in the context of normative functioning, the Kanner hypothesis implies social costs to spatial/numerical prowess

Informed Consent and Trisomy Screening: Delineating Parent and Professional Interests

The landmark decision of Montgomery established that patients’ right to self-determination and autonomy underpins the doctrine of informed consent. However, a growing body of medical research routinely conclude that consent for trisomy screening is less than informed. Consent for trisomy screening is not a ‘one-off event’: it is a multistage and multifaceted process, requiring the involvement and integration of interprofessional practices across the pathway. However, Mordel exposed systemic frailties and disconnects in terms of the processes for securing parent consent for trisomy screening: a dimension often missed by medico-legal studies in this field. With the recent introduction of non-invasive prenatal testing (NIPT) and additional trisomies (Edwards’ and Patau’s Syndrome) to the traditional Down’s Syndrome screening programme, this has exacerbated existing concerns around parent decision-making and consent for screening. Using empirical methods, this study seeks to delineate parent and professional interests for providing and securing consent for trisomy screening

Innate talents: reality or myth?

Talents that selectively facilitate the acquisition of high levels of skill are said to be present in some children but not others. The evidence for this includes biological correlates of specific abilities, certain rare abilities in autistic savants, and the seemingly spontaneous emergence of exceptional abilities in young children, but there is also contrary evidence indicating an absence of early precursors of high skill levels. An analysis of positive and negative evidence and arguments suggests that differences in early experiences, preferences, opportunities, habits, training, and practice are the real determinants of excellence

The impact of a computerized decision aid on empowering pregnant women for choosing vaginal versus cesarean section delivery: study protocol for a randomized controlled trial

Cesarean delivery on maternal request (CDMR) is one of the main reasons for cesarean delivery in Iran, and women often need help in making a decision about the delivery options available to them. The main objective of this study is to evaluate the effect of a computerized decision aid (CDA) system on empowering pregnant women in choosing an appropriate mode of delivery. This CDA contrasts the advantages and disadvantages of vaginal versus cesarean section delivery in terms of their value to the individual woman. The protocol concerns a randomized trial study that will be performed among Iranian women. Four hundred pregnant women will be recruited from two private and two public prenatal centers in Mashhad, Iran. They will be randomly assigned to either an intervention or a control group. The designed CDA will be provided to the intervention group, whereas the control group will only receive routine care. The CDA provides educational contents as well as some recommendations. The CDA's knowledge base is obtained from the results of studies on predictors of cesarean delivery. The CDA's software will be installed on women's computers for use at home. The two primary outcomes for the study are O'Connor's Decisional Conflict Scale and knowledge as measured by true/false questions. Actual mode of delivery (vaginal versus cesarean) will be compared in the two groups. We investigate the effect of a CDA on empowering pregnant women in terms of reducing their decisional conflict as well as on improving their clinical knowledge pertaining to mode of delivery. This trial is registered with the Iran Trial Registrar under registration number IRCT2015093010777N4 and registration date 26 October 201

Architecture for clinical decision support system (CDSS) using high risk pregnancy ontology

Shortage of medical professionals in the rural area has been one of the reasons why maternal mortality is still very high.Midwife family program had been introduced to overcome the shortage but the lack of skills in recognizing high risk pregnancy becomes another factor of high maternal mortality rate.A good prenatal care program will help to identify the danger in time and provide early management.Therefore, this paper provides solution by introducing a new architecture of clinical decision support system (CDSS) in the domain of high risk pregnancy. The proposed architecture is composed of seven main components.The ontological approach was used to develop the knowledge repository in the CDSS architecture.The need for CDSS was investigated through interview session, questionnaire distribution and observation.In addition, the comparison with other CDSSs approach is also highlighted in the paper

Testing the Integrated Theory of Health Behaviour Change for Postpartum Weight Management

Aim.  This is a report of a correlational study to test the Integrated Theory of Health Behaviour Change within the context of postpartum weight self‐management including the impact of race/ethnicity and weight classification. Background.  Women experiencing childbirth face increasing challenges to manage their weight postpartum. Little is known about women’s weight self‐management during the complex physiological and psychosocial transition of the postpartum period. Methods.  Data were collected during the birth hospitalization and 4 months postbirth during 2005 and 2006. A quota sample of 250 postpartum women using two strata, race/ethnicity and prepregnant weight classification, were enrolled; 179 women completed the follow‐up survey. A survey questionnaire measured concepts from the Integrated Theory of Health Behaviour Change concepts, including knowledge and beliefs (self‐efficacy, outcome expectancy and goal congruence), self‐regulation skills and abilities, and social facilitation (social support and social influence) and the proximal outcome of weight retention. Factor analysis identified 5 factors consistent with the theoretical concepts that accounted for 47·1% of total survey variance. Results.  Model testing using path analysis explored the relationship among factors. The final model explained 25·7% of the variance in self regulation at 4 months, but did not explain weight retention. The contribution of select concepts to total variance was different for Caucasian and African American women, but not by weight classification. Conclusions.  Findings support use of theoretical concepts and relationships to understand postpartum weight self‐management. The different relationships among concepts in Caucasian and African American women should be considered in planning targeted postpartum weight self‐management interventions