Healthcare users’ experiences of communicating with healthcare professionals about children who have life-limiting conditions: A qualitative systematic review protocol

REVIEW QUESTION / OBJECTIVE The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users’ experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, “healthcare users” will be taken to include children who have life-limiting conditions and their families. The question to be addressed is: - What are healthcare users’ experiences of communicating with healthcare professionals about children who have life-limiting conditions? INCLUSION CRITERIA - Types of participants: This review will consider all qualitative studies that focus on users of healthcare services for children who have life-limiting conditions. These users are anticipated to include children who have a life-limiting condition and their family members. In instances where children are not under the legal care of one or both parents, service users may also include other types of legal guardians. - Phenomena of interest: This review will consider experiences of communicating with healthcare professionals about children who have life-limiting conditions. - Context: This review will consider studies relating to communication with healthcare professionals about children who have a life-limiting condition, irrespective of whether the healthcare service is based in a hospital, hospice, or community setting. There is no restriction on the country in which a study was conducted.

Systematic analysis of changes in cannabis use among participants in control conditions of randomised controlled trials

Introduction Cannabis remains the most used illegal substance across the globe, and negative outcomes and disorders are common. A spotlight therefore falls on reductions in cannabis use in people with cannabis use disorder. Current estimates of unassisted cessation or reduction in cannabis use rely on community surveys, and few studies focus on individuals with disorder. A key interest of services and researchers is to estimate effect size of reductions in consumption among treatment seekers who do not obtain treatment. Effects within waiting list or information-only control conditions of randomised controlled trials offer an opportunity to study this question. Method This paper examines the extent of reductions in days of cannabis use in the control groups of randomised controlled trials on treatment of cannabis use disorders. A systematic literature search was performed to identify trials that reported days of cannabis use in the previous 30 (or equivalent). Results Since all but one of the eight identified studies had delayed treatment controls, results could only be summarised across 2–4 months. Average weighted days of use in the previous 30 days fell from 24.5 to 19.9, and a meta-analysis using a random effects model showed an average reduction of 0.442 SD. However, every study had at least one significant methodological issue. Conclusions While further high-quality data is needed to confirm the observed effects, these results provide a baseline from which researchers and practitioners can estimate the extent of change required to detect effects of cannabis treatments in services or treatment trials.

Delineating environmental envelopes to improve mapping of species distributions, via a hurdle model with CART &/or MaxEnT

Species distribution modelling (SDM) typically analyses species’ presence together with some form of absence information. Ideally absences comprise observations or are inferred from comprehensive sampling. When such information is not available, then pseudo-absences are often generated from the background locations within the study region of interest containing the presences, or else absence is implied through the comparison of presences to the whole study region, e.g. as is the case in Maximum Entropy (MaxEnt) or Poisson point process modelling. However, the choice of which absence information to include can be both challenging and highly influential on SDM predictions (e.g. Oksanen and Minchin, 2002). In practice, the use of pseudo- or implied absences often leads to an imbalance where absences far outnumber presences. This leaves analysis highly susceptible to ‘naughty-noughts’: absences that occur beyond the envelope of the species, which can exert strong influence on the model and its predictions (Austin and Meyers, 1996). Also known as ‘excess zeros’, naughty noughts can be estimated via an overall proportion in simple hurdle or mixture models (Martin et al., 2005). However, absences, especially those that occur beyond the species envelope, can often be more diverse than presences. Here we consider an extension to excess zero models. The two-staged approach first exploits the compartmentalisation provided by classification trees (CTs) (as in O’Leary, 2008) to identify multiple sources of naughty noughts and simultaneously delineate several species envelopes. Then SDMs can be fit separately within each envelope, and for this stage, we examine both CTs (as in Falk et al., 2014) and the popular MaxEnt (Elith et al., 2006). We introduce a wider range of model performance measures to improve treatment of naughty noughts in SDM. We retain an overall measure of model performance, the area under the curve (AUC) of the Receiver-Operating Curve (ROC), but focus on its constituent measures of false negative rate (FNR) and false positive rate (FPR), and how these relate to the threshold in the predicted probability of presence that delimits predicted presence from absence. We also propose error rates more relevant to users of predictions: false omission rate (FOR), the chance that a predicted absence corresponds to (and hence wastes) an observed presence, and the false discovery rate (FDR), reflecting those predicted (or potential) presences that correspond to absence. A high FDR may be desirable since it could help target future search efforts, whereas zero or low FOR is desirable since it indicates none of the (often valuable) presences have been ignored in the SDM. For illustration, we chose Bradypus variegatus, a species that has previously been published as an exemplar species for MaxEnt, proposed by Phillips et al. (2006). We used CTs to increasingly refine the species envelope, starting with the whole study region (E0), eliminating more and more potential naughty noughts (E1–E3). When combined with an SDM fit within the species envelope, the best CT SDM had similar AUC and FPR to the best MaxEnt SDM, but otherwise performed better. The FNR and FOR were greatly reduced, suggesting that CTs handle absences better. Interestingly, MaxEnt predictions showed low discriminatory performance, with the most common predicted probability of presence being in the same range (0.00-0.20) for both true absences and presences. In summary, this example shows that SDMs can be improved by introducing an initial hurdle to identify naughty noughts and partition the envelope before applying SDMs. This improvement was barely detectable via AUC and FPR yet visible in FOR, FNR, and the comparison of predicted probability of presence distribution for pres/absence.

Systematic literature review: Research on Supported Playgroups

Overview This review of research conducted with supported playgroups was prepared for the Queensland Department of Education, Training and Employment (DETE). The report provides a synthesis of the research on the effectiveness of supported playgroups to improve child, parent, and community outcomes and to identify key features of supported playgroups that support effective outcomes. Supported playgroups are community-based services that provide a low intensity parenting intervention, through regular group sessions for parent-child dyads. Supported playgroups target vulnerable families who may benefit from parenting support. Supported playgroups have common goals to enhance children’s early learning and parental wellbeing. Method A search strategy was devised to identify research studies, nationally and internationally, that involved parent-child group programs for families with young children, delivered under the leadership of an employed facilitator. Academic databases and other data sources were explored for studies conducted in the period from 2004 to 2014. Summary descriptions of the research studies were developed; assessment of research methodologies was made; research evidence on the effectiveness of supported playgroups to improve child, parent, and community outcomes was identified; and comparative analyses of the implementation features of supported playgroups were completed. Findings The search strategy identified 34 research publications, reporting on 29 different programs. Twenty-six of the studies report on research conducted in Australia and eight reported on research conducted in other countries, including the United Kingdom, Canada, and the United States. Three clusters of playgroups were identified: Category 1 - Standard supported playgroups; Category 2 - Mobile playgroups; Category 3 – Supported playgroups with specific interventions. The research studies identified encompassed experimental and non-experimental research designs. The studies of standard supported playgroups and mobile playgroups were most often qualitative studies and modest in scale, in terms of the number of research participants. Experimental and quasi-experimental research designs characterised the studies identified in the category of supported playgroups with specific interventions. Overall, the research studies that were categorised as supported playgroups with specific interventions provided stronger evidence for effectiveness to improve parental behaviour in ways that are known to support children’s early developmental competence. Qualitative studies, including case studies and ethnographic research, documented important features of program delivery, such as the importance of facilitators’ interpersonal skills to positive experiences for families in the playgroups; as well as the important opportunities that the playgroups afforded to vulnerable families to reduce social isolation. Conclusions The potential for supported playgroups to improve a broad range of learning and psychosocial outcomes for children and parents was suggested by many of the research studies. However, the nature of the research designs employed means that it is not possible to conclude that there is strong evidence of the impact of supported playgroups on child, parent, and community outcomes. The qualitative studies did provide rich descriptions about the implementation processes of playgroups and also captured the variability in the delivery of the playgroups in terms of who participated, local contextual factors that impacted on the playgroup experiences, and the nature of the experiences of parents within the playgroups. Research methodologies need to be employed that address the limitations of the studies to date. This would provide more defensible evidence that supported playgroups have an impact over time on outcomes for children, families, and communities. Overall, this area of research remains relatively under-evaluated in terms of rigorous research designs. The identified research studies point to some promising research directions but do not yet enable strong claims to be made about the effectiveness of the standard playgroup or mobile playgroup models to impact on parenting outcomes. Data collected from interview and survey methodologies clearly identifies that supported playgroups are highly acceptable to families. Given the popularity of supported playgroups to engage families across diverse communities, and the reported high levels of satisfaction and benefits identified within many of the research studies, it is clear that the provision of supported playgroups is fulfilling an important community need by providing support to parents with young children. However, there is a need to strengthen the evidence base that supported playgroups are an effective early parenting intervention that improves outcomes for children, parents, and communities.

Integrated lean six sigma approach for patient flow improvement in hospital emergency department

This research aims to develop an Integrated Lean Six Sigma approach to investigate and resolve the patient flow problems in hospital emergency departments. It was proposed that the voice of the customer and the voice of the process should be considered simultaneously to investigate the current process of patient flow. Statistical analysis, visual process mapping with A3 problem solving sheet, and cause and effect diagrams have been used to identify the major patient flow issues. This research found that engaged frontline workers, long-term leadership obligation, an understanding of patients' requirements and the implementation of a systematic integration of lean strategies could continuously improve patient flow, health care service and growth in the emergency departments.

A systematic review of community pharmacist therapeutic knowledge of dietary supplements

Background: Internationally, the use of dietary supplements has been growing rapidly. Patient support for pharmacist sales of nutritional and dietary supplements is also strong. The increase in demand for nutritional and dietary supplements and subsequent advice about these products, however, makes it necessary that pharmacists maintain a contemporary knowledge of the area. Aim of review: This systematic review was conducted to examine the current evidence regarding the level of the nutritional and dietary supplement knowledge of community pharmacists and their understanding of their therapeutic effects. Method: Electronic databases including Medline, Scopus, Embase, CINAHL, Scifinder and the Cochrane Controlled Trials Register were searched. Studies assessing nutritional knowledge of pharmacists in community pharmacies were eligible for inclusion. All languages and study designs were considered. Study results were analysed and pharmacist knowledge scores were given out of 100 . Results: From 5594 studies identified, nine met the inclusion criteria. Each study tested pharmacist knowledge with predetermined questions calculating results as the number of questions answered correctly. These knowledge scores were converted to a percentage score for the purpose of this paper. The median knowledge score across all papers was 64%. A lack of studies assessing community pharmacist's knowledge of commonly sold vitamins and minerals was observed. Conclusions Global community pharmacist knowledge of dietary supplements appears to be poor. Community pharmacists have an professional responsibility to provide accurate health information about dietary supplements as they do for any other therapies they provide to patients. Further research including that which assesses pharmacist's therapeutic knowledge of commonly sold vitamins and minerals is suggested.

Genome-wide mapping of cystitis due to Streptococcus agalactiae and Escherichia coli in mice identifies a unique bladder transcriptome that signifies pathogen-specific antimicrobial defense against urinary tract infection

The most common causes of urinary tract infections (UTIs) are Gram-negative pathogens such as Escherichia coli; however, Gram-positive organisms including Streptococcus agalactiae, or group B streptococcus (GBS), also cause UTI. In GBS infection, UTI progresses to cystitis once the bacteria colonize bladder, but the host responses triggered in the bladder immediately following infection are largely unknown. Here, we used genome-wide expression profiling to map the bladder transcriptome of GBS UTI in mice infected transurethrally with uropathogenic GBS that was cultured from a 35 year-old women with cystitis. RNA from bladders was applied to Affymetrix Gene-1.0ST microarrays; qRT-PCR was used to analyze selected gene responses identified in array datasets. A surprisingly small significant gene list of 172 genes was identified at 24h; this compared to 2507 genes identified in a side-by-side comparison with uropathogenic E. coli (UPEC). No genes exhibited significantly altered expression at 2h in GBS-infected mice according to arrays despite high bladder bacterial loads at this early time point. The absence of a marked early host response to GBS juxtaposed with broad-based bladder responses activated by UPEC at 2h. Bioinformatics analyses including integrative systems-level network mapping revealed multiple activated biological pathways in the GBS cystitis transcriptome that regulate leukocyte activation, inflammation, apoptosis, and cytokine-chemokine biosynthesis. These findings define a novel, minimalistic type of bladder host response triggered by GBS UTI, which comprises collective antimicrobial pathways that differ dramatically from those activated by UPEC. Overall, this study emphasizes the unique nature of bladder immune activation mechanisms triggered by distinct uropathogens.

Mapping the integrity of differential obligations within the United Nations framework convention on climate change

This chapter unpacks public institutional integrity concepts through an examination of differential obligations within the global climate regime.

CYP19A1 fine-mapping and Mendelian randomization: Estradiol is causal for endometrial cancer

Candidate gene studies have reported CYP19A1 variants to be associated with endometrial cancer and with estradiol (E2) concentrations. We analyzed 2937 single nucleotide polymorphisms (SNPs) in 6608 endometrial cancer cases and 37 925 controls and report the first genome wide-significant association between endometrial cancer and a CYP19A1 SNP (rs727479 in intron 2, P=4.8x10(-11)). SNP rs727479 was also among those most strongly associated with circulating E2 concentrations in 2767 post-menopausal controls (P=7.4x10(-8)). The observed endometrial cancer odds ratio per rs727479 A-allele (1.15, CI=1.11-1.21) is compatible with that predicted by the observed effect on E2 concentrations (1.09, CI=1.03-1.21), consistent with the hypothesis that endometrial cancer risk is driven by E2. From 28 candidate-causal SNPs, 12 co-located with three putative gene-regulatory elements and their risk alleles associated with higher CYP19A1 expression in bioinformatical analyses. For both phenotypes, the associations with rs727479 were stronger among women with a higher BMI (Pinteraction=0.034 and 0.066 respectively), suggesting a biologically plausible gene-environment interaction.

Fine mapping of variants associated with endometriosis in the WNT4 region on chromosome 1p36

Genome-wide association studies show strong evidence of association with endometriosis for markers on chromosome 1p36 spanning the potential candidate genes WNT4, CDC42 and LINC00339. WNT4 is involved in development of the uterus, and the expression of CDC42 and LINC00339 are altered in women with endometriosis. We conducted fine mapping to examine the role of coding variants in WNT4 and CDC42 and determine the key SNPs with strongest evidence of association in this region. We identified rare coding variants in WNT4 and CDC42 present only in endometriosis cases. The frequencies were low and cannot account for the common signal associated with increased risk of endometriosis. Genotypes for five common SNPs in the region of chromosome 1p36 show stronger association signals when compared with rs7521902 reported in published genome scans. Of these, three SNPs rs12404660, rs3820282, and rs55938609 were located in DNA sequences with potential functional roles including overlap with transcription factor binding sites for FOXA1, FOXA2, ESR1, and ESR2. Functional studies will be required to identify the gene or genes implicated in endometriosis risk.

High-density fine-mapping of a chromosome 10q26 linkage peak suggests association between endometriosis and variants close to CYP2C19

OBJECTIVE To refine a previously reported linkage peak for endometriosis on chromosome 10q26, and conduct follow-up analyses and a fine-mapping association study across the region to identify new candidate genes for endometriosis. DESIGN Case-control study. SETTING Academic research. PATIENT(S) Cases=3,223 women with surgically confirmed endometriosis; controls=1,190 women without endometriosis and 7,060 population samples. INTERVENTION(S) Analysis of 11,984 single nucleotide polymorphisms on chromosome 10. MAIN OUTCOME MEASURE(S) Allele frequency differences between cases and controls. RESULT(S) Linkage analyses on families grouped by endometriosis symptoms (primarily subfertility) provided increased evidence for linkage (logarithm of odds score=3.62) near a previously reported linkage peak. Three independent association signals were found at 96.59 Mb (rs11592737), 105.63 Mb (rs1253130), and 124.25 Mb (rs2250804). Analyses including only samples from linkage families supported the association at all three regions. However, only rs11592737 in the cytochrome P450 subfamily C (CYP2C19) gene was replicated in an independent sample of 2,079 cases and 7,060 population controls. CONCLUSION(S) The role of the CYP2C19 gene in conferring risk for endometriosis warrants further investigation.

Association mapping

Association mapping seeks to identify marker alleles present at significantly different frequencies in cases carrying a particular disease or trait compared with controls. Genome-wide association studies are increasingly replacing candidate gene-based association studies for complex diseases, where a number of loci are likely to contribute to disease risk and the effect size of each particular risk allele is typically modest or low. Good study design is essential to the success of an association study, and factors such as the heritability of the disease under investigation, the choice of controls, statistical power, multiple testing and whether the association can be replicated need to be considered before beginning. Likewise, thorough quality control of the genotype data needs to be undertaken prior to running any association analyses. Finally, it should be kept in mind that a significant genetic association is not proof positive that a particular genetic locus causes a disease, but rather an important first step in discovering the genetic variants underlying a complex disease.

The missing link of crime analysis: A systematic approach to testing competing hypotheses

Crime analysts have traditionally received little guidance from academic researchers in key tasks in the analysis process, specifically the testing of multiple hypotheses and evaluating evidence in a scientific fashion. This article attempts to fill this gap by outlining a method (the Analysis of Competing Hypotheses) of systematically analysing multiple explanations for crime problems. The method is systematic, avoids many cognitive errors common in analysis, and is explicit. It is argued that the implementation of this approach makes analytic products audit-able, the reasoning underpinning them transparent, and provides intelligence managers a rational professional development tool for individual analysts.

A systematic literature review of alcohol education programmes in middle and high school settings (2000-2014)

Purpose Social marketing benchmark criteria were used to understand the extent to which single-substance alcohol education programmes targeting adolescents in middle and high school settings sought to change behaviour, utilised theory, included audience research and applied the market segmentation process. The paper aims to discuss these issues. Design/methodology/approach A systematic literature review retrieved a total of 1,495 identified articles; 565 duplicates were removed. The remaining 930 articles were then screened. Articles detailing formative research or programmes targeting multiple substances, parents, families and/or communities, as well as elementary schools and universities were excluded. A total of 31 articles, encompassing 16 qualifying programmes, were selected for detailed evaluation. Findings The majority of alcohol education programmes were developed on the basis of theory and achieved short- and medium-term behavioural effects. Importantly, most programmes were universal and did not apply the full market segmentation process. Limited audience research in the form of student involvement in programme design was identified. Research limitations/implications This systematic literature review focused on single-substance alcohol education programmes targeted at middle and high school student populations, retrieving studies back to the year 2000. Originality/value The results of this systematic literature review indicate that application of the social marketing benchmark criteria of market segmentation and audience research may represent an avenue for further extending alcohol education programme effectiveness in middle and high school settings.

The search for genes contributing to endometriosis risk

BACKGROUND: Genetic variation contributes to the risk of developing endometriosis. This review summarizes gene mapping studies in endometriosis and the prospects of finding gene pathways contributing to disease using the latest genome-wide strategies. METHODS: To identify candidate-gene association studies of endometriosis, a systematic literature search was conducted in PubMed of publications up to 1 April 2008, using the search terms 'endometriosis' plus 'allele' or 'polymorphism' or 'gene'. Papers included were those with information on both case and control selection, showed allelic and/or genotypic results for named germ-line polymorphisms and were published in the English language. RESULTS: Genetic variants in 76 genes have been examined for association, but none shows convincing evidence of replication in multiple studies. There is evidence for genetic linkage to chromosomes 7 and 10, but the genes (or variants) in these regions contributing to disease risk have yet to be identified. Genome-wide association is a powerful method that has been successful in locating genetic variants contributing to a range of common diseases. Several groups are planning these studies in endometriosis. For this to be successful, the endometriosis research community must work together to genotype sufficient cases, using clearly defined disease classifications, and conduct the necessary replication studies in several thousands of cases and controls. CONCLUSIONS: Genes with convincing evidence for association with endometriosis are likely to be identified in large genome-wide studies. This will provide a starting point for functional and biological studies to develop better diagnosis and treatment for this debilitating disease.