Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the Toronto Staging Guidelines (TG) by Population-Based Cancer Registries (PBCRs) to the most common solid paediatric cancers.MethodsPBCRs within and outside Europe were invited to participate and identify all cases of Neuroblastoma, Wilms Tumour, Medulloblastoma, Ewing Sarcoma, Rhabdomyosarcoma and Osteosarcoma diagnosed in a consecutive three-year period (2014-2017) and apply TG at diagnosis. Other non-stage prognostic factors, treatment, progression/recurrence, and cause of death information were collected as optional variables. A minimum of three-year follow-up was required. To standardise TG application by PBCRs, on-line workshops led by six tumour-specific clinical experts were held. To understand the role of data availability and quality, a survey focused on data collection/sharing processes and a quality assurance exercise were generated. To support data harmonization and query resolution a dedicated email and a question-and-answers bank were created.Results67 PBCRs from 28 countries participated and provided a maximally de-personalized, patient-level dataset. For 26 PBCRs, data format and ethical approval obtained by the two sponsoring institutions (UCL and INT) was sufficient for data sharing. 41 participating PBCRs required a Data Transfer Agreement (DTA) to comply with data protection regulations. Due to heterogeneity found in legal aspects, 18 months were spent on finalizing the DTA. The data collection survey was answered by 68 respondents from 63 PBCRs; 44% of them confirmed the ability to re-consult a clinician in cases where stage ascertainment was difficult/uncertain. Of the total participating PBCRs, 75% completed the staging quality assurance exercise, with a median correct answer proportion of 92% [range: 70% (rhabdomyosarcoma) to 100% (Wilms tumour)].ConclusionDifferences in interpretation and processes required to harmonize general data protection regulations across countries were encountered causing delays in data transfer. Despite challenges, the BENCHISTA Project has established a large collaboration between PBCRs and clinicians to collect detailed and standardised TG at a population-level enhancing the understanding of the reasons for variation in overall survival rates for CC, stimulate research and improve national/regional child health plans

Facilitating safety in midwifery education and practice

This chapter explores the concepts of risk and safety and how managing risk is not the same as facilitating safety. The fears that women and health providers may have about birth are presented along with determination of how midwives can empower women to trust in their ability to give birth and be mothers. The existing research that supports physiological birth, including ways of instilling confidence about normal birth in both women and midwives, is also examined. Exposure to environments in which safe physiological birth is facilitated is an important aspect of midwifery education which will impact on the development of a midwife’s individual philosophy and future practice. The place of birth, the impact that various models of care have on birth, and the importance of effective relationships are also critically explored

Genome wide association study reveals plant loci controlling heritability of the rhizosphere microbiome

Host genetics has recently been shown to be a driver of plant microbiome composition. However, identifying the underlying genetic loci controlling microbial selection remains challenging. Genome-wide association studies (GWAS) represent a potentially powerful, unbiased method to identify microbes sensitive to the host genotype and to connect them with the genetic loci that influence their colonization. Here, we conducted a population-level microbiome analysis of the rhizospheres of 200 sorghum genotypes. Using 16S rRNA amplicon sequencing, we identify rhizosphere-associated bacteria exhibiting heritable associations with plant genotype, and identify significant overlap between these lineages and heritable taxa recently identified in maize. Furthermore, we demonstrate that GWAS can identify host loci that correlate with the abundance of specific subsets of the rhizosphere microbiome. Finally, we demonstrate that these results can be used to predict rhizosphere microbiome structure for an independent panel of sorghum genotypes based solely on knowledge of host genotypic information

How are decisions made to access a planned epidural in labour? : midwife-women interactions in antenatal consultations

Objective: The purpose of this study was to examine the ways in the decision to access a planned epidural in labour was topicalised and negotiated between pregnant women and midwives. Design: This article uses conversation analysis to examine how decision-making unfolds in antenatal consultations in a large metropolitan hospital in South Australia. Data were sampled from naturally-occurring interactions between women and midwives in routine antenatal consultations. Analysis focused on talk about planning to access (or, avoid) an epidural during an upcoming labour. Findings: This paper illustrates that in the context of woman-centred care, women are held unilaterally responsible for the decision to accept or reject a planned epidural in labour with little or no input from the midwife. Midwives take a step back from involvement in the discussion beyond the solicitation of a decision from the woman. Women wanting a planned epidural took a strong, assertive stance in the interaction and drew on their previous birthing experience, limiting opportunity for the midwife to engage in meaningful discussion about the risks and benefits. On the other hand, women rejecting a planned epidural were less assertive and engaged in more complex interactional work to account for their decision. Key conclusions: The lack of involvement by midwives may be linked to the non-directive ethos that prevails in maternity care. It is argued that, in this dataset, the institutional imperative for women to know and decide on pain relief while pregnant in order to allocate to a model of care is prioritised over women’s aspirations and expectations of childbirth. Implications for practice: By analysing the ways in which midwives and women interact at the point in time at which decisions were made to plan access to an epidural we can continue to reveal underlying forces that drive the rising rates of medical interventions in childbirth. This paper also contributes to research evidence on how midwives manage the potentially contradictory dialect between supporting women’s childbirth preferences while also managing institutional requirements and evidence-based practice

"Trying to give birth naturally was out of the question" : accounting for intervention in childbirth

Problem: Studies of women's childbirth preferences repeatedly show that natural birth remains highly valued, yet the majority of births involve some form of medical intervention. Reasons for this lack of correspondence have typically been investigated through interviews and focus-groups with women. Relatively little research explores the ways in which women describe their experiences of childbirth outside of such research settings. Background: Most maternity services promote woman-centred care, whereby women are encouraged to take active roles in deciding how to give birth. However, recent research indicates that women often report feeling disempowered during labour and birth in hospital settings. Aim: We sought to examine how women account for use of medical intervention in hospitals by examining narratives posted on online discussion forums. Method: A thematic analysis of 106 publically available birth stories, sourced using the Internet search terms ‘birth story’ and ‘birth narrative’ was undertaken. Findings: Medical interventions in childbirth were routinely described as unwanted, yet as unavoidable, and two types of account were typically drawn on to explain their use: Protection of the baby/mother; and inflexible hospital policy/practice. We examine these two types of account, focusing on how their design oriented to the discordance between mothers’ reported desires for a natural birth, and their experiences in hospital. Conclusion: The experience of medical intervention in childbirth is routinely oriented to as a matter that requires explanation or account in online birth narratives. Women repeatedly referred to their preference to avoid intervention, but described being unable to do so in hospital

Can Perfectionism Affect Career Development? Exploring Career Thoughts and Self-Efficacy

This study identified relationships among career-specific barriers (i.e., perfectionism, negative career thoughts, career decision-making self-efficacy) in a sample of 300 college students. The authors found relationships among the constructs of interest, prediction of variance in career decision-making self-efficacy, and differences among groups of perfectionists on endorsements of negative career thoughts and career decision-making self-efficacy. The findings suggest that interventions addressing maladaptive perfectionism and dysfunctional career thinking may enhance clients\u27 confidence in decision making. © 2014 by the American Counseling Association. All rights reserved

Genome wide association study reveals plant loci controlling heritability of the rhizosphere microbiome.

Host genetics has recently been shown to be a driver of plant microbiome composition. However, identifying the underlying genetic loci controlling microbial selection remains challenging. Genome-wide association studies (GWAS) represent a potentially powerful, unbiased method to identify microbes sensitive to the host genotype and to connect them with the genetic loci that influence their colonization. Here, we conducted a population-level microbiome analysis of the rhizospheres of 200 sorghum genotypes. Using 16S rRNA amplicon sequencing, we identify rhizosphere-associated bacteria exhibiting heritable associations with plant genotype, and identify significant overlap between these lineages and heritable taxa recently identified in maize. Furthermore, we demonstrate that GWAS can identify host loci that correlate with the abundance of specific subsets of the rhizosphere microbiome. Finally, we demonstrate that these results can be used to predict rhizosphere microbiome structure for an independent panel of sorghum genotypes based solely on knowledge of host genotypic information

Characterization of Schizosaccharomyces pombe Hus1: a PCNA-Related Protein That Associates with Rad1 and Rad9.

Hus1 is one of six checkpoint Rad proteins required for all Schizosaccharomyces pombe DNA integrity checkpoints. MYC-tagged Hus1 reveals four discrete forms. The main form, Hus1-B, participates in a protein complex with Rad9 and Rad1, consistent with reports that Rad1-Hus1 immunoprecipitation is dependent on the rad9+ locus. A small proportion of Hus1-B is intrinsically phosphorylated in undamaged cells and more becomes phosphorylated after irradiation. Hus1-B phosphorylation is not increased in cells blocked in early S phase with hydroxyurea unless exposure is prolonged. The Rad1-Rad9-Hus1-B complex is readily detectable, but upon cofractionation of soluble extracts, the majority of each protein is not present in this complex. Indirect immunofluorescence demonstrates that Hus1 is nuclear and that this localization depends on Rad17. We show that Rad17 defines a distinct protein complex in soluble extracts that is separate from Rad1, Rad9, and Hus1. However, two-hybrid interaction, in vitro association and in vivo overexpression experiments suggest a transient interaction between Rad1 and Rad17