Exploration of dietary patterns and alcohol consumption in pregnant women in the UK: A mixed methods study

Backgroundfetal Alcohol Spectrum Disorders is a term used to describe a range of physical, cognitive and behavioural deficits in the offspring of women who drank alcohol during pregnancy. A growing body of evidence suggests alcohol consumption in the presence of poor maternal nutrition may increase the risk of harm to the developing fetus.Objectiveto investigate relationships between maternal dietary patterns and alcohol consumption, and explore which factors influence women's decisions about what to eat and drink during pregnancy.Designa mixed methods study comprising a questionnaire (paper-based and online) and semi-structured, in-depth interviews with a sub-sample of women who completed the questionnaire.Participantswomen were eligible for inclusion if they were ≥16 years of age, pregnant and living in the UK and were recruited through antenatal clinics, specialist substance misuse antenatal clinics or via social media platforms; 350 women completed a questionnaire and a sub-sample of 6 women participated in an interview.Methodsthe questionnaire comprised the Alcohol Use Disorders Identification Test Consumption to measure alcohol consumption patterns and a Food Frequency Questionnaire to measure dietary intake. Dietary pattern analysis was conducted using Principle Components Analysis and linear regression models were used to explore relationships between dietary pattern scores and alcohol consumption. Analyses were adjusted for socio-demographic and lifestyle characteristics. Semi-structured, in-depth interviews were conducted face-to-face and analysed thematically.Findingstwo key dietary patterns were derived. Women who reported frequent alcohol consumption before and during pregnancy were more likely to adhere to the ‘Prudent’ dietary pattern compared to those who abstained. No relationships were observed between alcohol consumption and adherence to the ‘Cafeteria’ dietary pattern. Six key themes were identified through the qualitative analysis: (1) pregnancy as a time to review behaviour; (2) listen to your body – it will tell you what you need; (3) treats are still important – on special occasions; (4) social and cultural expectations constrain behaviour; (5) inconsistent or ambiguous information creates uncertainty; and 6) confidence increases following a successful pregnancy.Conclusionsthose who drink low levels of alcohol during pregnancy may have better quality diets compared to women who report no alcohol consumption. The reasons for this are complex and influenced by social context and previous pregnancy experience, which should be considered when healthcare professionals provide advice during this period

Investigating relationships between maternal micronitrient intakes, dietary patterns and alcohol consumption during pregnancy

Background: Evidence from animal models of fetal alcohol spectrum disorders (FASD) suggests that the risk of ethanol-induced harm to the developing fetus is greater in the presence of inadequate maternal nutrition. Findings from observational studies in the general population have also indicated that heavy drinking is associated with poorer quality diets. Aims: The aims of this thesis were to explore relationships between patterns of alcohol consumption and dietary intake during pregnancy, and to investigate whether they influence the risk of adverse infant and childhood outcomes. Methods: Five interrelated studies were undertaken. The initial study involved the design and validation of a food frequency questionnaire (FFQ). This was followed by two cross-sectional studies to explore relationships between dietary intake and alcohol consumption in two different samples of pregnant women: 1) a small sample recruited from across the UK (n=350); 2) a secondary analysis of the Avon Longitudinal Study of Parents and Children (ALSPAC) cohort (n=11,457). This was then followed by two further studies, which comprised of secondary analyses of the ALSPAC cohort to investigate whether relationships between diet and alcohol influence the risk of adverse offspring outcomes: 1) small for gestational age (SGA) (n=9,935); and 2) IQ scores at 8 years (n=5,557). Results: Results suggest that heavy drinking during pregnancy is associated with diets characterised by low intakes of fruit and vegetables, and high intakes of processed, fried foods, which showed weak correlation with important micronutrients. Women in quartile one for vitamin E intake, who reported binge drinking, were significantly more likely to have a SGA baby compared to women in other quartiles who also reported binge drinking during pregnancy. Micronutrient intakes were not associated with childhood IQ scores at 8 years in women who reported alcohol consumption during pregnancy. Conclusion: The investigations undertaken as part of this thesis have highlighted a number of new and important findings. The results highlighted the clustering of potentially harmful patterns of dietary intake and alcohol consumption during pregnancy, and suggest that the potential harm from antenatal alcohol consumption may be exacerbated in the presence of inadequate micronutrient intakes

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan : Scoping Review

Hamakawa N, Nakano R, Kogetsu A, Coathup V, Kaye J, Yamamoto BA, Kato K, Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan:Scoping Review, J Med Internet Res 2020;22(8):e16441, DOI: 10.2196/16441, PMID: 32749228, PMCID: 743562

Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients' views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform.We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy (MD) patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD.A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire (n = 40). The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers.Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan : Scoping Review

Background: Information and communication technology (ICT) has made remarkable progress in recent years and is being increasingly applied to medical research. This technology has the potential to facilitate the active involvement of research participants. Digital platforms that enable participants to be involved in the research process are called participant-centric initiatives (PCIs). Several PCIs have been reported in the literature, but no scoping reviews have been carried out. Moreover, detailed methods and features to aid in developing a clear definition of PCIs have not been sufficiently elucidated to date. Objective: The objective of this scoping review is to describe the recent trends in, and features of, PCIs across the United States, the United Kingdom, and Japan. Methods: We applied a methodology suggested by Levac et al to conduct this scoping review. We searched electronic databases—MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase (Excerpta Medica Database), CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Ichushi-Web—and sources of grey literature, as well as internet search engines—Google and Bing. We hand-searched through key journals and reference lists of the relevant articles. Medical research using ICT was eligible for inclusion if there was a description of the active involvement of the participants. Results: Ultimately, 21 PCIs were identified that have implemented practical methods and modes of various communication activities, such as patient forums and use of social media, in the field of medical research. Various methods of decision making that enable participants to become involved in setting the agenda were also evident. Conclusions: This scoping review is the first study to analyze the detailed features of PCIs and how they are being implemented. By clarifying the modes and methods of various forms of communication and decision making with patients, this review contributes to a better understanding of patient-centric involvement, which can be facilitated by PCIs.Hamakawa N, Nakano R, Kogetsu A, Coathup V, Kaye J, Yamamoto BA, Kato K, Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan:Scoping Review, J Med Internet Res 2020;22(8):e16441, DOI: 10.2196/16441, PMID: 32749228, PMCID: 743562

Dietary Patterns and Alcohol Consumption During Pregnancy: Secondary Analysis of Avon Longitudinal Study of Parents and Children

Background: Large general population surveys show that heavy regular and episodic alcohol consumption are associated with lower intakes of fruits and vegetables, and higher intakes of processed and fried meat. This is of particular concern regarding pregnant women, as both alcohol intake and inadequate maternal nutrition are independently associated with adverse fetal outcomes. The current study aimed to determine associations between maternal dietary patterns and alcohol consumption during pregnancy. Methods: Women were participating in the Avon Longitudinal Study of Parents and Children, and provided details of alcohol consumption at 18weeks’ gestation and diet at 32weeks’ gestation (n=9,839). Dietary patterns were derived from the food frequency questionnaire data using principal components analysis. Associations between alcohol consumption and dietary patterns were determined using multiple linear regression, adjusted for various sociodemographic and lifestyle factors. Results: After adjustment, drinking ≥1 unit/d during the first trimester (β=0.23 [95% CI: 0.08, 0.38]; p=0.002) and binge drinking (≥4 units in 1day) during the first half of pregnancy (β=0.14 [95% CI: 0.07, 0.21];

Participant-centric initiatives and medical research: Scoping review protocol

Background. Significant advances in digital technologies have meant that health care data can be collected, stored, transferred, and analyzed for research purposes more easily than ever before. Participant-centric initiatives (PCI) are defined as “tools, programs, and projects that empower participants to engage in the research process” using digital technologies and have the potential to provide a number of benefits to both participants and researchers, including the promotion of public trust in medical research, improved quality of research, increased recruitment and retention, and improved health care delivery. Objective. The main objective of this scoping review is to describe the extent and range of PCIs across the United Kingdom, United States, and Japan that are designed to facilitate medical research. Methods. The methodological framework described by Levac et al will be applied to this scoping review. We will search electronic databases (MEDLINE, EMBASE, PsychINFO, Cumulative Index to Nursing, and Allied Health Literature and CiNii), grey literature sources, Internet search engines (Google and Bing), and hand search key journals and reference lists of relevant articles. All digital tools and programs will be eligible for inclusion if there is a description of key features and functions that fall within the parameters of a PCI. Only those that play a role in medical research will be included. Results. Preliminary searches conducted in MEDLINE and EMBASE retrieved 1820 and 2322 results, respectively. The scoping review will be completed by January 2018. Conclusions. The scoping review will be the first to map the extent and range of PCIs currently available across the United Kingdom, United States, and Japan, and will be the first review to contribute to a better understanding of what PCIs patients may benefit from. Researchers and practitioners will be able to use information in this review as a guide for patients and also as a guide for the development of future tools and programs. The results will be disseminated through a peer-reviewed publication and conference presentations

Challenges and opportunities for ELSI early career researchers

Background: Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research questions as well as prompt re-evaluation of earlier work and a growing number of scholars working in this area now identify themselves as ELSI scholars rather than with a particular discipline. Main text: Due to the international and interdisciplinary nature of ELSI research, scholars can often find themselves isolated from disciplinary or regionally situated support structures. We conducted a workshop with Early Career Researchers (ECRs) in Oxford, UK, and this paper discusses some of the particular challenges that were highlighted. While ELSI ECRs may face many of the universal challenges faced by ECRs, we argue that a number of challenges are either unique or exacerbated in the case of ELSI ECRs and discuss some of the reasons as to why this may be the case. We identify some of the most pressing issues for ELSI ECRs as: interdisciplinary angst and expertise, isolation from traditional support structures, limited resources and funding opportunities, and uncertainty regarding how research contributions will be measured. We discuss the potential opportunity to use web 2.0 technologies to transform academic support structures and address some of the challenges faced by ELSI ECRs, by helping to facilitate mentoring and support, access to resources and new accreditation metrics. Conclusion: As our field develops it is crucial for the ELSI community to continue looking forward to identify how emerging digital solutions can be used to facilitate the international and interdisciplinary research we perform, and to offer support for those embarking on, progressing through, and transitioning into an ELSI research career.COST Action IS1303Wellcome Trust/096599/2/11/

Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives

Background: The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs are embracing this populist rhetoric to encourage wider public participation. Discussion: We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. Summary: We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance