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Health care is a high-risk industry. To improve communication about daily events and begin the journey toward a high reliability organization, the Riley Hospital for Children at Indiana University Health implemented a daily safety brief. Various departments in our children’s hospital were asked to participate in a daily safety brief, reporting daily events and unexpected outcomes within their scope of responsibility. Participants were surveyed before and after implementation of the safety brief about communication and awareness of events in the hospital. The length of the brief and percentage of departments reporting unexpected outcomes were measured. The analysis of the presurvey and the postsurvey showed a statistically significant improvement in the questions related to the awareness of daily events as well as communication and relationships between departments. The monthly mean length of time for the brief was 15 minutes or less. Unexpected outcomes were reported by 50% of the departments for 8 months. A daily safety brief can be successfully implemented in a children’s hospital. Communication between departments and awareness of daily events were improved. Implementation of a daily safety brief is a step toward becoming a high reliability organization.

From 2012 to 2015, 16 pregnancies were monitored by ultrasonography in nine tamanduas (Tamandua tetradactyla) housed in three zoological facilities. Sonographic measurements were recorded to establish fetal growth curves using thoracic and skull landmarks described for giant anteaters (Myrmecophaga tridactyla). All pregnancies resulted in the uncomplicated delivery of healthy offspring, thus gestational development was considered normal. These data may be used as a reference for normal fetal development with potential for estimating parturition date in the absence of breeding data.

Objective To describe and examine the EXIT (EXperiences of Induction Tool), and report on the experience of women undergoing PGE2 vaginal gel IOL, who were participants in a randomized controlled trial comparing early amniotomy with repeat-PGE2. Study Design Following an evening dose of PGE2 vaginal gel, 245 women with live singleton term pregnancies were randomized to amniotomy or repeat-PGE2. Women’s experience of IOL was a secondary outcome measure, assessed using the self-report EXIT administered by phone at 7–9 days post-partum. The 10-item EXIT assessed women’s experiences in multiple domains using a 5-point agreement scale. Principal components analysis with orthogonal varimax rotation was undertaken to examine the scale structure. Internal consistency, face, content, construct and discriminant validity were also assessed. Results The final 3-component solution comprised 8 of the 10 EXIT items, explained 76.1% of the variance and had a good fit to model (p < 0.001). The three resulting components were representative of women’s experience of the time taken to give birth, discomfort with IOL, and subsequent contractions. The items loading to each component showed good internal consistency for time taken to give birth (α=0.88), discomfort with IOL (α=0.78), and experience of subsequent contractions (α=0.87). Women in the repeat-PGE2 group reported a less favorable experience with the time taken to give birth (mean (SD): 3.5 (1.4) vs 3.9 (1.2); p = 0.04) and more discomfort with IOL (2.9 (1.1) vs 2.5 (1.0); p = 0.04) compared to women in the amniotomy group. At the individual item level, women in the amniotomy group responded more positive about the time taken to have their baby (median (IQR): 4 (3-5) vs 3 (2-5); p

Background In Australia, there are many culturally and linguistically diverse communities and Chinese migrants make up one of the largest. Yet, little is known about healthcare providers’ (HCPs) unique experiences in providing contraceptive care for Chinese migrant women. There is minimal research into the HCPs’ perceptions of challenges or opportunities in engaging Chinese migrant women in informed and shared decision-making processes during contraceptive counselling. The aim of this study is to explore HCPs’ experiences of providing contraceptive care for Chinese migrant women, their perceptions of women’s care needs when choosing contraceptive methods, as well as their own needs in supporting women’s decision-making. Methods: Semi-structured interviews were conducted with 20 HCPs in Sydney, Australia who had substantial experience in providing contraceptive services to Chinese women who were recent migrants. Transcribed audio-recorded data were analysed using thematic analysis. Results: Four main themes were identified, including: ‘Are you using contraception?’: the case for being proactive and opportunistic; ‘Getting the message across’: barriers to communication; ‘Hormones are unnatural?’: women favouring non-hormonal methods; and ‘Word of mouth’: social influence on contraceptive method choice. Conclusions: In order to facilitate informed choice and shared decision-making with Chinese migrant women during contraceptive counselling, broader health system and community-level strategies are needed. Such strategies could include improving HCPs’ cultural competency in assessing and communicating women’s contraceptive needs; providing professional interpreting services and translated materials; and improving women’s health literacy, including their contraceptive knowledge and health system awareness.

Perioperative medicine consultations contribute to the value and safety in a patient’s surgical episode of care. Application of the following time-tested key consultative concepts enhances the effectiveness of clinical care—defining the clinical question, establishing urgency, understanding the role of the medical consultant, independent review, collaborative communication, and appropriate follow-up.

IntroductionChoosing Wisely, an international effort to reduce low value care worldwide, considers communication between clinicians and patients during routine clinical encounters a key mechanism for change. In Australia, Choosing Wisely has developed a 5 Questions resource to facilitate better conversations. The primary aim of this study is to evaluate the impact of the Choosing Wisely Australia 5 Questions resource and a video designed to prepare patients for question-asking and participation in shared decision-making on (a) self-efficacy to ask questions and participate in shared decision-making, (b) intention to participate in shared decision-making and (c) a range of secondary outcomes. The secondary aim of this study is to determine whether participants’ health literacy modifies the effects of the interventions.Methods and analysisWe will use 2×2×2 between-subjects factorial design (preparation video: yes, no × Choosing Wisely 5 Questions resource: yes, no × health literacy: adequate, inadequate). Participants will be recruited by an online market research company, presented with a hypothetical non-specific low back pain scenario, and randomised to study groups stratified by health literacy. Quantitative primary and secondary outcome data will be analysed as intention-to-treat using appropriate regression models (ie, linear regression for continuous outcomes, logistic regression for dichotomous categorical outcomes).Ethics and disseminationEthical approval for this study was obtained from the University of Sydney Human Research Ethics Committee (protocol number: 2018/965). The results from this work will be disseminated through peer-reviewed international journals, conferences and updates with collaborating public health bodies. Resources developed for this study will be made available to patients and clinicians following trial completion.Trial registration numberThis trial has been registered with the Australia New Zealand Clinical Trials Registry (trial number: 376477) and the stage is Pre-results.

BackgroundStruggling medical students is an under-researched in medical education. It is known, however, that early identification is important for effective remediation. The aim of the study was to determine the predictive effect of medical school admission tools regarding whether a student will struggle academically.MethodsData comprise 700 students from the University of New South Wales undergraduate medical program. The main outcome of interest was whether these students struggled during this 6-year program; they were classified to be struggling they failed any end-of-phase examination but still graduated from the program. Discriminate Function Analysis (DFA) assessed whether their pre-admission academic achievement, Undergraduate Medicine Admission Test (UMAT) and interview scores had predictive effect regarding likelihood to struggle.ResultsA lower pre-admission academic achievement in the form of Australian Tertiary Admission Rank (ATAR) or Grade Point Average (GPA) were found to be the best positive predictors of whether a student was likely to struggle. Lower UMAT and poorer interview scores were found to have a comparatively much smaller predictive effect.ConclusionAlthough medical admission tests are widely used, medical school rarely use these data for educational purposes. The results of this study suggest admission test data can predict who among the admitted students is likely to struggle in the program. Educationally, this information is invaluable. These results indicate that pre-admission academic achievement can be used to predict which students are likely to struggle in an Australian undergraduate medicine program. Further research into predicting other types of struggling students as well as remediation methods are necessary.

Population-level biomedical research has become crucial to the health system’s ability to improve the health of the population. This form of research raises a number of well-documented ethical concerns, perhaps the most significant of which is the inability of the researcher to obtain fully informed specific consent from participants. Two proposed technical solutions to this problem of consent in large-scale biomedical research that have become increasingly popular are meta-consent and dynamic consent. We critically examine the ethical and practical credentials of these proposals and find them lacking. We suggest that the consent problem is not solved by adopting a technology driven approach grounded in a notion of ‘specific’ consent but by taking seriously the role of research governance in combination with broader conceptions of consent. In our view, these approaches misconstrue the rightful location of authority in the way in which population-level biomedical research activities are structured and organized. We conclude by showing how and why the authority for determining the nature and shape of choice making about participation ought not to lie with individual participants, but rather with the researchers and the research governance process, and that this necessarily leads to the endorsement of a fully articulated broad consent approach.

Background In Australia, ethnic Chinese people are one of the largest, youngest and fastest growing overseas-born groups. Yet, little is known about their perceptions of contraceptive methods and their experiences with choosing one. Decisions about contraceptive methods are preference sensitive. Understanding the influencing factors of Chinese migrant women’s contraceptive method choice and practices will help cater to their decision-making needs in a culturally sensitive and responsive way. Methods A qualitative study design underpinned by critical realism approach was used to explore Chinese migrant women’s perceptions and experiences of choosing contraceptive methods. Semi-structured interviews were conducted with 22 women who self-identified as being ethnically Chinese and had been living in Australia for no more than 10 years. The interview guide was adapted from the Ottawa Decision Support Framework. Majority of the interviews were conducted in Mandarin Chinese. Transcribed data was analysed using thematic analysis method. Results Four major themes were identified, including: ‘every medicine is part poison: hormonal contraceptives cause harm to the body’; ‘intrauterine device, a device used in the past for married women’; ‘it takes two (or one) to decide, depending on the relationship dynamics and contraception preferences’; and ‘it is not necessary to seek medical advice in choosing contraceptive methods’. Conclusions Our findings suggest that Chinese migrant women’s perceptions and experiences of choosing contraceptive methods are influenced by complex personal, cultural, societal and inter-relational factors. Chinese migrant women were cautious of using hormonal methods due to fears of side-effects, including reduced or absent menstrual bleeding. Women were also reluctant to consider intrauterine devices as options due to associating them with past experiences of other women and themselves and also fears of potential complications. There was a reluctant attitude towards seeking medical advice regarding contraception due to beliefs that needing to use contraception is not an illness requiring treatment. Such findings are likely to be useful in increasing healthcare professionals’ and policy makers’ understanding of Chinese migrant women’s contraceptive method preferences, beliefs and behaviours. They also help to develop culturally and linguistically sensitive strategies, which goes beyond the provision of contraceptive counselling, in assisting Chinese migrant women’s decision-making needs.

Objectives Patient decision aids are regarded as a strategy for engaging patients in decision-making, facilitating evidence translation, and reducing low-value health care. However, financial conflicts of interest among authors of these resources have the potential to bias their content and undermine their usefulness. The prevailing quality framework in this field – the International Patient Decision Aids Standards – requires that decision aids disclose author financial conflicts of interest. However, to our knowledge, no research has examined whether such disclosure has the desired effect. Our objective was to conduct a simulated pilot study of how members of the public perceive and respond to financial conflicts of interest disclosure in patient decision aids. Methods We conducted an Internet-based between-subjects fractional factorial experiment. Participants were English-speaking adults in the United States invited by a research recruitment service. Quotas were imposed so the sample was composed equally of participants with adequate (AHL) and limited health literacy (LHL). Participants were asked to imagine they had been diagnosed with an illness, were presented with a fictional one-page decision aid on three treatment options (No Treatment, Abbatide, Benedent), and were advised either that they found it online or received it from a doctor. The decision aid featured a financial conflicts of interest disclosure either negative or positive in content and either basic or enhanced in detail and design. Participants completed several measures. Two items administered to verify the effectiveness of our experimental manipulation are the primary focus of this analysis. Results After excluding people ineligible for the study or with missing or unreliable data, our sample comprised 395 participants. When asked if they read the conflicts of interest disclosure when they viewed the decision aid, 197 participants (49.9%) responded ‘Yes’ (AHL: 55.3%; LHL: 44.4%). Of participants who reported reading the disclosure, 72 (36.5%) gave a correct answer when asked, ‘Are any of the authors of the decision aid paid by the company that sells Abbatide or Benedent?’ (AHL 34.9%; LHL 38.6%). Overall, 18.2% of participants reported reading the disclosure and correctly recalled whether a conflict of interest was disclosed, with the lowest proportion (5.3%) observed for the basic, negative disclosure. Conclusions A minority of study participants reported reading and correctly recalled the content of a financial conflicts of interest disclosure in a fictional decision aid. Whether these findings can be generalised to actual decision aid users is uncertain. Our recruitment of members of the public and use of a simulated illness scenario, although motivated by ethical considerations, may have weakened the salience of both the decision aid and the disclosure. On the other hand, knowledge of study participation along with the relative prominence of the disclosure in the fictional decision aid may have amplified participants’ attention to it. Altogether, we tentatively conclude that disclosure of financial conflicts of interest in patient decision aids may not have the desired effect and advocate further research attention to optimal methods of addressing this issue.

The file attached to this record is the author's final peer reviewed version. Dementia is a global challenge and educating and upskilling the workforce is a policy imperative. A World Health Organisation priority area is the development of dementia knowledge and skills amongst health and social care professionals. The European Parliament has called for European countries to develop action plans and create common guidelines to provide education and training to professionals caring for people with dementia and their family caregivers. The inconsistencies and gaps in dementia education have been repeatedly highlighted internationally as well as in the United Kingdom (UK); this is despite the four home nations having voluntary frameworks and guidelines for dementia education. This perspectives article on dementia education is written by representatives of the Higher Education Dementia Network (HEDN), a well-established group of academics involved in dementia education and research in over 65 Higher Education Institutions across the UK. HEDN works collaboratively with Dementia UK to promote consistent, high quality dementia education and share best practice. At HEDN we believe that reference to the knowledge and skills frameworks of the four nations within Professional Regulatory Body (PRB) requirements would ensure a more rigorous and consistent approach to dementia education across the UK. Reference to the Frameworks would support their adoption as a required and monitored sector minimum standard across professional boundaries. HEDN therefore recommends that application of the knowledge and skills within these frameworks becomes a requirement for (re)validation/approval of relevant health, social and housing professional programmes. In this article we explain the rationale behind the recommendations made by HEDN and the implications for PRBs and Higher Education Institutions.

Hip dysplasia is common in children with cerebral palsy (CP), especially in those children with notable functional impairment. Severity of hip dysplasia has been shown to correlate with higher Gross Motor Function Classification System levels. Migration percentage measured on AP pelvis radiographs is the key radiographic measure quantifying hip displacement in CP. Hip surveillance programs for children with CP exist in Europe, Australia, and parts of Canada and have been adopted as standard of care. These programs have demonstrated improved detection of hip subluxation and appropriate early intervention with a resultant decrease in the number of painful dislocations. Hip surveillance programs provide healthcare providers with guidance for a schedule of obtaining hip radiographs based on patients' age, Gross Motor Function Classification System level, and migration percentage. Although systematic surveillance programs have yet to be adopted in the United States, several centers and organizations are currently investigating the potential and efficacy of hip screening in CP.

National Institutes of Health (NIH), Monarch Initiative [OD #5R24OD011883]; Forums for Integrative Phenomics [U13 CA221044-01]; NCATS Data Translator [1OT3TR002019]; NCATS National Center for Digital Health Informatics Innovation [U24 TR002306];NIH Data Commons [1 OT3 OD02464-01 UNCCH]; Cost Action CA 16118 Neuro-MIG; British Heart Foundation Programme Grant [RG/13/5/30112]; Division of Intramural Research; NIAID; NIH; E-RARE project Hipbi-RD [01GM1608]; European Union's Horizon 2020 Research and Innovation Programme [779257]. Funding for open access charge: NIH; Donald A. Roux Family Fund (to P.N.R.). The Human Phenotype Ontology (HPO) - a standardized vocabulary of phenotypic abnormalities associated with 7000+ diseases - is used by thousands of researchers, clinicians, informaticians and electronic health record systems around the world. Its detailed descriptions of clinical abnormalities and computable disease definitions have made HPO the de facto standard for deep phenotyping in the field of rare disease. The HPO's interoperability with other ontologies has enabled it to be used to improve diagnostic accuracy by incorporating model organism data. It also plays a key role in the popular Exomiser tool, which identifies potential disease-causing variants from whole-exome or whole-genome sequencing data. Since the HPO was first introduced in 2008, its users have become both more numerous and more diverse. To meet these emerging needs, the project has added new content, language translations, mappings and computational tooling, as well as integrations with external community data. The HPO continues to collaborate with clinical adopters to improve specific areas of the ontology and extend standardized disease descriptions. The newly redesigned HPO website (www.human-phenotype-ontology.org) simplifies browsing terms and exploring clinical features, diseases, and human genes.

This study examines the impact of cross-firm financial statement comparability on regulatory oversight of accounting quality. Consistent with the notion that comparable accounting systems enhance regulators’ ability to identify accounting deviations from financial reporting, we find that the likelihood that the SEC issues a comment letter on 10-K filings that have poor accounting quality increases with financial statement comparability. Further analysis reveals that the regulatory benefits from financial statement comparability are more salient when the SEC faces higher monitoring constraints in filing reviews. Overall, we provide novel evidence suggesting that higher financial statement comparability improves the efficacy of the SEC’s oversight of accounting quality by reducing the information costs associated with cross-firm comparisons.

Background There is limited evidence on how to implement shared decision-making (SDM) interventions in routine practice. We conducted a qualitative study, embedded within a 2 × 2 factorial cluster randomized controlled trial, to assess the acceptability and feasibility of two interventions for facilitating SDM about contraceptive methods in primary care and family planning clinics. The two SDM interventions comprised a patient-targeted intervention (video and prompt card) and a provider-targeted intervention (encounter decision aids and training). Methods Participants were clinical and administrative staff aged 18 years or older who worked in one of the 12 clinics in the intervention arm, had email access, and consented to being audio-recorded. Semi-structured telephone interviews were conducted upon completion of the trial. Audio recordings were transcribed verbatim. Data collection and thematic analysis were informed by the 14 domains of the Theoretical Domains Framework, which are relevant to the successful implementation of provider behaviour change interventions. Results Interviews (n = 29) indicated that the interventions were not systematically implemented in the majority of clinics. Participants felt the interventions were aligned with their role and they had confidence in their skills to use the decision aids. However, the novelty of the interventions, especially a need to modify workflows and change behavior to use them with patients, were implementation challenges. The interventions were not deeply embedded in clinic routines and their use was threatened by lack of understanding of their purpose and effect, and staff absence or turnover. Participants from clinics that had an enthusiastic study champion or team-based organizational culture found these social supports had a positive role in implementing the interventions. Conclusions Variation in capabilities and motivation among clinical and administrative staff, coupled with inconsistent use of the interventions in routine workflow contributed to suboptimal implementation of the interventions. Future trials may benefit by using implementation strategies that embed SDM in the organizational culture of clinical settings.

In recent years, firms reporting revisions of prior financial statements outnumber firms reporting restatements. Misstatements that are material to prior periods are required to be transparently disclosed as restatements, whereas immaterial errors can be reported as revisions. Based on SEC guidance and widely used materiality benchmarks, I find that a significant proportion, approximately one third, of revisions are “suspect” in that they meet at least one materiality criterion. These "suspect" revisions are more likely to be reported when managers have a strong incentive to avoid restatements, in particular, when they face the threat of compensation clawback for reporting a restatement. Overall, this evidence suggests that materiality discretion is being used opportunistically to conceal material misstatements as revisions.

Background Value-based health care aims to optimize the balance of patient outcomes and health care costs. To improve value in perinatal care using this strategy, standard outcomes must first be defined. The objective of this work was to define a minimum, internationally appropriate set of outcome measures for evaluating and improving perinatal care with a focus on outcomes that matter to women and their families. Methods An interdisciplinary and international Working Group was assembled. Existing literature and current measurement initiatives were reviewed. Serial guided discussions and validation surveys provided consumer input. A series of nine teleconferences, incorporating a modified Delphi process, were held to reach consensus on the proposed Standard Set. Results The Working Group selected 24 outcome measures to evaluate care during pregnancy and up to 6 months postpartum. These include clinical outcomes such as maternal and neonatal mortality and morbidity, stillbirth, preterm birth, birth injury and patient-reported outcome measures (PROMs) that assess health-related quality of life (HRQoL), mental health, mother-infant bonding, confidence and success with breastfeeding, incontinence, and satisfaction with care and birth experience. To support analysis of these outcome measures, pertinent baseline characteristics and risk factor metrics were also defined. Conclusions We propose a set of outcome measures for evaluating the care that women and infants receive during pregnancy and the postpartum period. While validation and refinement via pilot implementation projects are needed, we view this as an important initial step towards value-based improvements in care. Electronic supplementary material The online version of this article (10.1186/s12913-018-3732-3) contains supplementary material, which is available to authorized users.

Background: Publication of comprehensive clinical care guidelines for Duchenne muscular dystrophy (DMD) in 2010 was a milestone for DMD patient management. Our CARE-NMD survey investigates the neuromuscular, medical, and psychosocial care of DMD patients in Europe, and compares it to the guidelines. Methods: A cross-sectional survey of 1677 patients contacted via the TREAT-NMD patient registries was conducted using self-report questionnaires in seven European countries. Results: Survey respondents were 861 children and 201 adults. Data describe a European DMD population with mean age of 13.0 years (range 0.8–46.2) of whom 53% had lost ambulation (at 10.3 years of age, median). Corticosteroid medication raised the median age for ambulatory loss from 10.1 years in patients never medicated to 11.4 years in patients who received steroids (p

Deep phenotyping has been defined as the precise and comprehensive analysis of phenotypic abnormalities in which the individual components of the phenotype are observed and described. The three components of the Human Phenotype Ontology (HPO; www.human-phenotype-ontology.org) project are the phenotype vocabulary, disease-phenotype annotations and the algorithms that operate on these. These components are being used for computational deep phenotyping and precision medicine as well as integration of clinical data into translational research. The HPO is being increasingly adopted as a standard for phenotypic abnormalities by diverse groups such as international rare disease organizations, registries, clinical labs, biomedical resources, and clinical software tools and will thereby contribute toward nascent efforts at global data exchange for identifying disease etiologies. This update article reviews the progress of the HPO project since the debut Nucleic Acids Research database article in 2014, including specific areas of expansion such as common (complex) disease, new algorithms for phenotype driven genomic discovery and diagnostics, integration of cross-species mapping efforts with the Mammalian Phenotype Ontology, an improved quality control pipeline, and the addition of patient-friendly terminology. ispartof: Nucleic Acids Research vol:45 issue:D1 pages:D865-D876 ispartof: location:England status: published

Introduction: There are currently several strategies developed to facilitate access and data sharing in the rare disease field. These strategies have paid special attention to the importance of rare disease patient registries and biobanks, as they are essential tools for surveillance and the provision of biosamples and phenotypic and genetic data for research worldwide. However, they are usually fragmented by disease, data model and country. Moreover, these resources have restricted access in order to protect privacy of patient data.Areas covered: This article is an overview of existing initiatives that facilitate access to rare disease patient registries and biobanks, future challenges of accessing data/biosamples and the major barriers to achieve interoperability and worldwide sharing.Expert opinion: RD patient registries and biobanks play an important role in the discovery of either new rare diseases or new phenotype-genotype correlations. However, there is still little access to data and impor...

The limb-girdle muscular dystrophies (LGMDs) are a diverse group of genetic neuromuscular conditions that usually manifest in the proximal muscles of the hip and shoulder girdles. Since the identification of the first gene associated with the phenotype in 1994, an extensive body of research has identified the genetic defects responsible for over 30 LGMD subtypes, revealed an increasingly varied phenotypic spectrum, and exposed the need to move towards a systems-based understanding of the molecular pathways affected. New sequencing technologies, including whole-exome and whole-genome sequencing, are continuing to expand the range of genes and phenotypes associated with the LGMDs, and new computational approaches are helping clinicians to adapt to this new genomic medicine paradigm. However, 60 years on from the first description of LGMD, no curative therapies exist, and systematic exploration of the natural history is still lacking. To enable rapid translation of basic research to the clinic, well-phenotyped and genetically characterized patient cohorts are a necessity, and appropriate outcome measures and biomarkers must be developed through natural history studies. Here, we review the international collaborations that are addressing these translational research issues, and the lessons learned from large-scale LGMD sequencing programmes.

Background: Congenital myasthenic syndromes (CMS) are a heterogeneous group of inherited neuromuscular disorders sharing the common feature of fatigable weakness due to defective neuromuscular transmission. Despite rapidly increasing knowledge about the genetic origins, specific features and potential treatments for the known CMS entities, the lack of standardized classification at the most granular level has hindered the implementation of computer-based systems for knowledge capture and reuse. Where individual clinical or genetic entities do not exist in disease coding systems, they are often invisible in clinical records and inadequately annotated in information systems, and features that apply to one disease but not another cannot be adequately differentiated. Results: We created a detailed classification of all CMS disease entities suitable for use in clinical and genetic databases and decision support systems. To avoid conflict with existing coding systems as well as with expert-defined group-level classifications, we developed a collaboration with the Orphanet nomenclature for rare diseases, creating a clinically understandable name for each entity and placing it within a logical hierarchy that paves the way towards computer-aided clinical systems and improved knowledge bases for CMS that can adequately differentiate between types and ascribe relevant expert knowledge to each. Conclusions: We suggest that data science approaches can be used effectively in the clinical domain in a way that does not disrupt preexisting expert classification and that enhances the utility of existing coding systems. Our classification provides a comprehensive view of the individual CMS entities in a manner that supports differential diagnosis and understanding of the range and heterogeneity of the disease but that also enables robust computational coding and hierarchy for machine-readability. It can be extended as required in the light of future scientific advances, but already provides the starting point for the creation of FAIR (Findable, Accessible, Interoperable and Reusable) knowledge bases of data on the congenital myasthenic syndromes. RT and HL received funding from the European Union, FP7 Grant No. 30544: RD-Connect and Horizon 2020 Grant No. 779257: Solve-RD, and the UK Medical Research Council (MRC) Centre for Neuromuscular Diseases (G1002274, grant ID 98482). AE received funding from NIH Grant NS109491. The funding bodies had no role in study design or execution or in writing the manuscript.

Purpose The purpose of this paper is to describe the process of developing a contemporary competency framework for admiral nurses in dementia care. Design/methodology/approach Information and evidence was gathered from research and policy literature regarding competencies to deliver advanced practice within dementia care. An online survey completed by 75 admiral nurses with follow-up interviews clarified current practice across the range of service contexts in which they work. A focus group (FG) of people living with dementia and family carers, and a reference group of practitioners helped to develop a competency framework which was refined through FGs with admiral nurses working in different areas. Findings The literature review, survey and interviews provided a framework grounded in up-to-date evidence and contemporary practice. There was broad agreement in the literature and the practitioners’ priorities regarding the core competencies of advanced practice, with constructive suggestions for making the framework useable in practice. This resulted in a robust framework articulating the competencies of admiral nurses which could be used for continuous professional development. Originality/value Engaging the admiral nurses ensured the competencies were contemporary, succinct and applicable within practice, and also cultivated a sense of ownership. Developing the competency framework with the admiral nurses not for them provides an approach which may have value for professionals undertaking a similar process in their specialist area. It is anticipated the competency framework will provide further evidence of the benefits of specialist nurse support for families affected by dementia.

Background Competing interests among patient decision aid authors have potential to undermine the usefulness of these tools for supporting patients to make informed and values-concordant health decisions. Competing interests may also contribute to overdiagnosis and overtreatment. Prevailing decision aid quality standards attempt to counteract the potential effects of competing interests by advocating disclosure. However, we know little about how decision aid users perceive and respond to competing interest disclosure statements and thus, whether this approach is sufficient. This poster will describe the protocol for a forthcoming experimental study designed to better understand users’ perceptions of and reactions to competing interest disclosure statements in patient decision aids. Methods Approximately 360 English-speaking adults in the United States will be recruited to participate in an online survey using a commercial panel service. Recruitment quotas will be imposed so that the final sample is composed equally of participants with adequate and limited health literacy. During the survey, participants will be asked to ‘Imagine that you have been told by a doctor that you have a rare and serious strain of the flu called Elephant Influenza’ and will be randomised to receive advice that either ‘While searching online, you find this decision aid on treatment options for Elephant Influenza’ or ‘While in the clinic, your doctor gives you this decision aid on treatment options for Elephant Influenza’. Participants will then be randomised to view a brief fictional patient decision aid on treatment options for Elephant Influenza that features one of three different competing interest disclosure statements (disclosure of no competing interests, disclosure of competing interests, disclosure of competing interests with additional cautionary statement about the bias competing interests can introduce) and asked several closed and open-ended questions. Analysis and dissemination Data analysis will address four primary research questions: (1) how frequently do decision aid readers notice, remember, and understand author competing interest disclosure statements in a patient decision aid, and does this depend on type of disclosure statement? (2) what is the effect of type of disclosure statement on decision aid readers’ perceptions of the trustworthiness of the decision aid, their (hypothetical) treatment choices, and their perceptions of the values concordance of their (hypothetical) treatment choices? (3) is the effect of type of disclosure statement on perceived trustworthiness, treatment choices, and perceived values concordance moderated by the (imagined) mode of delivery of the decision aid? and (4) how unnecessary, informative, patronizing, and important do decision aid readers perceive disclosure statements to be, and does this depend on type of disclosure statement? Study results will be disseminated widely and inform understanding of the adequacy of current approaches to managing competing interests among patient decision aid authors.

Background Women value receiving quality interpersonal care during abortion services, yet no measure exists to assess this outcome from patients’ perspectives. We sought to adapt the Interpersonal Quality in Family Planning care scale (Dehlendorf et al., American Journal of Obstetrics Gynaecology 10.1016/j.ajog.2016.01.173, 2016) for use in abortion care. Methods We adapted items from the original scale for the abortion context, and conducted cognitive interviews to explore the acceptability, understandability, and importance of the adapted items. Adults who spoke English and/or Spanish, had an abortion in the past year, and lived in the US were eligible to participate. Interview memos were analyzed concurrently with data collection to refine the measure in stages. Results We interviewed 26 participants. Items were tested over seven stages and led to four main changes. First, we revised three items to reflect concepts perceived as important to the specific decision-making context of abortion. Second, we removed two items that emerged as potentially inappropriate for this context. Third, we modified language in four items to improve their appropriateness for this context (e.g., ‘telling me’ to ‘explaining’; ‘letting me say’ to ‘listening to’). Fourth, we modified language in three items to improve their clarity. Three items remained unchanged, as there was consistent agreement on their importance, understandability, and relevance. Conclusions The resulting 10-item measure, the Interpersonal Quality in Abortion Care scale, was perceived to be highly important, understandable, and feasible to complete. Future psychometric evaluation can prepare it for use in clinical practice to ensure women feel adequately informed and supported during abortion care.

Objectives Competing interests among patient decision aid developers have the potential to undermine the capacity of these tools to support patients and others to make informed health decisions. Prominent decision aid quality frameworks (e.g., the International Patient Decision Aids Standards (IPDAS), the (United States) National Standards for the Certification of Patient Decision Aids) attempt to address this issue by advocating disclosure of decision aid funding sources and developers’ competing interests. Although the adequacy of this approach has been questioned on more than one occasion, we are aware of no empirical evidence pertaining to patients’ understanding of and reactions to competing interest disclosure statements. Here we present a secondary analysis of data collected in the process of developing a patient decision aid on postpartum contraception to shed light on this issue. Method We administered an online survey of people who were currently pregnant and/or ≤24 months postpartum, could read and write English, and resided in the United States. Participants were recruited using a commercial panel service. As part of the survey, we presented participants with a list of six information elements and solicited their views on whether each ought to be included in the decision aid itself or in a supporting document. One of the information elements was, ‘information about whether those who wrote the guide will make money based on what decisions people make after using the guide’. Other elements pertained to decision aid development and user testing, evidence sources, update policy, readability, and authors and their qualifications. Immediately after this, an open text question invited participants to elaborate on their responses or make additional suggestions. Results Of the 286 eligible participants, 46% responded that information on competing interests should be included in the decision aid itself, while 54% felt that it should be included in a supporting document. Notably, competing interest information was endorsed for inclusion in the decision aid less frequently than most other information elements. Some participants’ open text responses reiterated the perceived importance of competing interest information (‘Full disclosure of who is to profit from choices presented by the guide.’) However, other participants’ comments suggested a limited understanding of its relevance and/or little interest in it (‘I don’t think people need information about what is going to happen with money when using the guide, it has nothing to do with birth control,’ ‘The information is more important than who is making money off it because someone is always making money off something’). Conclusions Relying on mere disclosure of competing interests among patient decision aid developers may not adequately mitigate the negative effects of those interests for all decision aid users. Further research dedicated to exploring diverse patients’ understanding of and attitudes toward competing interest disclosure statements, as well as if and how such statements modify patients’ interpretation of the content and perceived trustworthiness of the decision aid, is warranted.

Objectives To understand, describe, and compare the content of patient decision aids on surgical and medication abortion, including 1) attributes used to describe each method, 2) approaches to clarify patients' values, 3) language used to describe each method, and 4) language used to frame women's decision-making role. Study Design We analyzed 49 decision aids identified through a previous systematic review and environmental scan. We used summative content analysis for objectives 1 and 2 and directed content analysis for objectives 3 and 4. Results We identified 37 method attributes. Overall, the attributes privileged medical over practical and emotional information. One decision aid included an explicit values clarification approach, and others included implicit approaches, which varied in length, information consistency, and organization. We identified four themes—information consistency, subjective claims, emotive or ambiguous descriptions, and medication abortion as not a real abortion—related to the methods' descriptions. We identified three themes—agency in choice, unclear emphasis on women's preferences, and endorsement of clinic services—related to women's decision-making role. Of the nine tools that listed factors influencing women's decision making, patient preferences was often listed last. Conclusions Early abortion method decision aids presented a broad range of information and typically framed the method choice as the woman's. However, their emphasis on medical attributes, use of inconsistent information, and, at times, biased presentation of methods may undermine quality decision making. We recommend adapting an existing decision aid or designing a novel tool based on the content and language that women find most acceptable.

Author(s): Forcino, Rachel C; Barr, Paul J; O'Malley, A James; Arend, Roger; Castaldo, Molly G; Ozanne, Elissa M; Percac-Lima, Sanja; Stults, Cheryl D; Tai-Seale, Ming; Thompson, Rachel; Elwyn, Glyn | Abstract: IntroductionCollaboRATE is a brief patient survey focused on shared decision making. This paper aims to (i) provide insight on facilitators and challenges to implementing a real-time patient survey and (ii) evaluate CollaboRATE scores and response rates across multiple clinical settings with varied patient populations.MethodAll adult patients at three United States primary care practices were eligible to complete CollaboRATE post-visit. To inform key learnings, we aggregated all mentions of unanticipated decisions, problems and administration errors from field notes and email communications. Mixed-effects logistic regression evaluated the impact of site, clinician, patient age and patient gender on the CollaboRATE score.ResultsWhile CollaboRATE score increased only slightly with increasing patient age (OR 1.018, 95% CI 1.014-1.021), female patient gender was associated with significantly higher CollaboRATE scores (OR 1.224, 95% CI 1.073-1.397). Clinician also predicts CollaboRATE score (random effect variance 0.146). Site-specific factors such as clinical workflow and checkout procedures play a key role in successful in-clinic implementation and are significantly related to CollaboRATE scores, with Site 3 scoring significantly higher than Site 1 (OR 1.759, 95% CI 1.216 to 2.545) or Site 2 (z=-2.71, 95% CI -1.114 to -0.178).DiscussionThis study demonstrates that CollaboRATE can be used in diverse primary care settings. A clinic's workflow plays a crucial role in implementation. Patient experience measurement risks becoming a burden to both patients and administrators. Episodic use of short measurement tools could reduce this burden.

Congenital myasthenic syndrome (CMS) is a heterogeneous disorder that causes fatigable muscle weakness. CMS has been associated with variants in the MuSK gene and, to date, 16 patients have been reported. MuSK-CMS patients present a different phenotypic pattern of limb girdle weakness. Here, we describe four additional patients and discuss the phenotypic and clinical relationship with those previously reported. Two novel damaging missense variants are described: c.1742T > A; p.I581N found in homozygosis, and c.1634T > C; p.L545P found in compound heterozygosis with p.R166*. The reported patients had predominant limb girdle weakness with symptom onset at 12, 17, 18, and 30 years of age, and the majority exhibited a good clinical response to Salbutamol therapy, but not to esterase inhibitors. Meta-analysis including previously reported variants revealed an increased likelihood of a severe, respiratory phenotype with null alleles. Missense variants exclusively affecting the kinase domain, but not the catalytic site, are associated with late onset. These data refine the phenotype associated with MuSK-related CMS.

Public health relies on technologies to produce and analyse data, as well as effectively develop and implement policies and practices. An example is the public health practice of epidemiology, which relies on computational technology to monitor the health status of populations, identify disadvantaged or at risk population groups and thereby inform health policy and priority setting. Critical to achieving health improvements for the underserved population of people living with rare diseases is early diagnosis and best care. In the rare diseases field, the vast majority of diseases are caused by destructive but previously difficult to identify protein-coding gene mutations. The reduction in cost of genetic testing and advances in the clinical use of genome sequencing, data science and imaging are converging to provide more precise understandings of the 'person-time-place' triad. That is: who is affected (people); when the disease is occurring (time); and where the disease is occurring (place). Consequently we are witnessing a paradigm shift in public health policy and practice towards 'precision public health'.Patient and stakeholder engagement has informed the need for a national public health policy framework for rare diseases. The engagement approach in different countries has produced highly comparable outcomes and objectives. Knowledge and experience sharing across the international rare diseases networks and partnerships has informed the development of the Western Australian Rare Diseases Strategic Framework 2015-2018 (RD Framework) and Australian government health briefings on the need for a National plan.The RD Framework is guiding the translation of genomic and other technologies into the Western Australian health system, leading to greater precision in diagnostic pathways and care, and is an example of how a precision public health framework can improve health outcomes for the rare diseases population.Five vignettes are used to illustrate how policy decisions provide the scaffolding for translation of new genomics knowledge, and catalyze transformative change in delivery of clinical services. The vignettes presented here are from an Australian perspective and are not intended to be comprehensive, but rather to provide insights into how a new and emerging 'precision public health' paradigm can improve the experiences of patients living with rare diseases, their caregivers and families.The conclusion is that genomic public health is informed by the individual and family needs, and the population health imperatives of an early and accurate diagnosis; which is the portal to best practice care. Knowledge sharing is critical for public health policy development and improving the lives of people living with rare diseases.

Inherited neuromuscular diseases (NMDs) are genetic disorders that affect the skeletal muscles or the nerves controlling muscle function. With a new generation of diagnostic options and recent advances in translational research improving the opportunities for therapy development for these rare conditions, capturing patient information in databases collecting a range of clinical and genetic data together with contact details has assumed an increasingly important role in trial planning and recruitment as well as natural history data collection. Here we provide an overview of a decade of patient registration activities in the NMD field, with a particular focus on patient registries set up with trial readiness in mind. A summary is provided of databases collecting precise genetic information focused on confirming the causative mutation and their evolution into registries that combine genetic data with additional clinical information useful for trial feasibility and recruitment. Use of these systems for a range of purposes beyond trial recruitment, including natural history assessment, care standards monitoring, genotype-phenotype correlation and disease burden evaluation is also described within the context of research networks (TREAT-NMD) and European Reference Networks (ERN-EURO-NMD). New initiatives including registries using controlled vocabularies for computational accessibility that focus on phenotypic data capture for gene discovery are analysed, and examples of the lessons learned at every stage are provided in order to allow new patient registration initiatives to benefit from the extensive experience gained.

This is the fourth and final article in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. Dementia training in hospitals is often inadequate and staff do not always have sufficient knowledge of dementia to provide appropriate care. It can also be difficult for them to identify when patients with dementia are in pain, especially when their communication skills deteriorate. The case studies presented illustrate how two NHS trusts have worked to ensure that their staff are fully equipped to care for people with dementia in hospital. Basildon and Thurrock University Hospitals NHS Foundation Trust in Essex made dementia training a priority by including dementia awareness in staff induction across a range of roles and providing additional training activities tailored to meet staff needs. Nottingham University Hospitals NHS Trust focused on pain assessment, aiming to standardise its approach for patients with dementia. The pain assessment in advanced dementia tool was chosen and piloted, and is being implemented across the trust after a positive response.

The hospital environment is often disorientating for people with dementia and can be particularly distressing when a patient is admitted in an emergency. Subsequent ward moves can also be disruptive and confusing, especially if they take place out of hours. Two NHS trusts aimed to improve the experience for patients with dementia by addressing the physical environment along with practical aspects of care provision at different stages in the hospital journey. The Queen Elizabeth Hospital King’s Lynn NHS Foundation Trust in Norfolk enhanced its emergency department environment by redesigning four bays and an observation area to be dementia-friendly. The hospital has supported these changes by providing dementia awareness training for all staff in these areas. Walsall Healthcare NHS Trust focused on minimising ward moves by implementing procedures to identify patients who should not be moved. Since introducing the new process, adherence has been good and there have been fewer ward moves.

This research study was initiated by York People First, an independent self-advocacy group run by and for people with learning disabilities. With the support of occupational therapy and nursing students who were completing practice placements, supermarkets were contacted to highlight challenges some people with learning disabilities experience when shopping. They responded, stating that they would require research to take forward any of the issues that had been raised. The aim of the study was therefore to investigate supermarket shopping experiences of people with learning disabilities with the intention of developing recommendations to provide to supermarkets

This is the second in a short series that presents case study examples of the positive work achieved by trusts that participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. Staff often think that there is insufficient time to get to know patients and carers, especially with large and challenging workloads. Combined with a lack of activities and stimulation for patients with dementia in hospital, this can result in poor engagement and a disconnect between staff and patients. To improve these relationships and give staff more time with patients, Cambridge University Hospitals NHS Foundation Trust has introduced bay nursing for patients with dementia, where one nurse is responsible for monitoring a bay alongside a healthcare assistant for an entire shift. Part of Betsi Cadwaladr University Health Board, Glan Clwyd Hospital in north Wales has focused on improving stimulation by creating an activity room with a specially trained activity worker, providing a relaxed and friendly setting where patients with dementia can take part in a range of activities and have lunch together.

Fifteen Daurian pika (Ochotona dauurica) were introduced to a zoological collection in December 2011 as founders for a planned breeding colony. Despite breeding success, the colony shrunk over 37 mo to 11 animals. Mortality in 11 of 46 deceased animals, including wild-caught "founders" and captive-born offspring, was associated with a suppurative inflammation and abscess formation of the spleen, skin, peripheral and internal lymph nodes, liver, lungs, kidney, or a combination of organs. Gram-negative, non-fermenting, rod-shaped bacteria were isolated from the abscesses in all cases. Steiner Chapman silver stain identified rod-shaped bacteria in the abscesses of seven animals. The bacteria were not detected with Gram stain, acid-fast stain, or Grocott silver methenamine stain and was not detectable by periodic acid-Schiff reaction. In two cases, including the index case, the bacteria were presumptively identified as Ralstonia pickettii on the basis of conventional biochemical characterization. The bacteria in the other cases were not further classifiable with conventional methods. Matrix-assisted laser desorption/ionization time of flight mass spectrometry and 16s rDNA gene sequencing resulted in identification to the genus level as Castellaniella in 10 of 12 cases. Comparative 16S rDNA gene sequence analysis showed that these isolates and Castellaniella ginsengisoli Strain DCY36T were 99% similar. Castellaniella ginsengisoli, a gram-negative bacterium isolated from soil of a ginseng field in South Korea, has not previously been associated with disease in animals or humans. It is uncertain how the bacterium was introduced to the Daurian pika colony or how it spread.

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Background currently, care providers and policy-makers internationally are working to promote normal birth. In Australia, such initiatives are being implemented without any evidence of the prevalence or determinants of normal birth as a multidimensional construct. This study aimed to better understand the determinants of normal birth (defined as without induction of labour, epidural/spinal/general anaesthesia, forceps/vacuum, caesarean birth, or episiotomy) using secondary analyses of data from a population survey of women in Queensland, Australia. Methods women who birthed in Queensland during a two-week period in 2009 were mailed a survey approximately three months after birth. Women ( n =772) provided retrospective data on their pregnancy, labour and birth preferences and experiences, socio-demographic characteristics, and reproductive history. A series of logistic regressions were conducted to determine factors associated with having labour, having a vaginal birth, and having a normal birth. Findings overall, 81.9% of women had labour, 66.4% had a vaginal birth, and 29.6% had a normal birth. After adjusting for other significant factors, women had significantly higher odds of having labour if they birthed in a public hospital and had a pre-existing preference for a vaginal birth. Of women who had labour, 80.8% had a vaginal birth. Women who had labour had significantly higher odds of having a vaginal birth if they attended antenatal classes, did not have continuous fetal monitoring, felt able to ‘take their time' in labour, and had a pre-existing preference for a vaginal birth. Of women who had a vaginal birth, 44.7% had a normal birth. Women who had a vaginal birth had significantly higher odds of having a normal birth if they birthed in a public hospital, birthed outside regular business hours, had mobility in labour, did not have continuous fetal monitoring, and were non-supine during birth. Conclusions these findings provide a strong foundation on which to base resources aimed at increasing informed decision-making for maternity care consumers, providers, and policy-makers alike. Research to evaluate the impact of modifying key clinical practices (e.g., supporting women׳s mobility during labour, facilitating non-supine positioning during birth) on the likelihood of a normal birth is an important next step.

A short series of articles in Nursing Older People, starting in September, presents case study examples of the positive work achieved by trusts that participated in the RCN’s development programme to improve dementia care in acute hospitals. This introductory article reports on the independent evaluation of the programme. The programme included a launch event, development days, site visits, ongoing support by the RCN lead and carer representatives and a conference to showcase service improvements. The evaluation drew on data from a survey, the site visits, trust action plans and a range of self-assessment tools for dementia care. The findings highlight substantial progress towards programme objectives and learning outcomes and suggest that the programme provided the focus, impetus and structure for trusts to make sustainable changes. It also equipped participants with the strategies and confidence to change practice. Recommendations are made for taking the programme forward.

Purpose: Evidence-based practice (EBP) is an essential component of good quality, patient-centered health care. This requires practitioners to acquire EBP skills and knowledge during undergraduate and continuing education. Evidence-based practice education exists in a range of health care disciplines, including optometry. Evidence-based practice education, however, depends on relevant skills and knowledge in educators. Courses and workshops exist for the development of EBP teaching skills in some areas of health care but not in optometry. Here, we describe a pilot workshop designed to enhance the teaching of EBP and to investigate the perspectives of optometric educators on EBP including their attitudes and perceived barriers to EBP and its teaching.\ud \ud Methods: Twenty-seven optometric educators including 8 facilitators participated. Of these, 14 were academics (including the 8 facilitators) and 13 were practitioners. Evidence-based practice attitudes were assessed using the Evidence-Based Practice Attitude Scale-50 with appropriate modifications for optometry. Workshop design incorporated strategies to trigger discussion among participants. A nominal group technique was used to identify, prioritize, and reach consensus on barriers to EBP.\ud \ud Results: Although some participants expressed reservations about EBP, a common understanding of the contemporary definition of EBP emerged in educators. Thirty-five barriers to EBP were identified; “time” was selected in the top five barriers by most participants and attracted the highest total score, well above any other barrier (negative attitude to EBP, volume of evidence, integration with clinical practice, and lack of lifelong learning mind-set). Attitudes toward EBP were generally positive and negatively correlated with age and time since graduation, respectively.\ud \ud Conclusions: A group of optometrists and academics new to implementing education in EBP displayed positive attitudes to EBP but considered that its application and teaching could be significantly hindered by a lack of time to access and appraise the large volume of available research evidence in the field of eye care.

Survival in Duchenne muscular dystrophy (DMD) has increased in recent years due to iterative improvements in care. We describe the results of the CARE-NMD survey of care practices for adults with DMD in the UK in light of international consensus care guidelines. We also compare the UK experience of adult care with the care available to pediatric patients and adults in other European countries (Germany, Denmark, Bulgaria, Czech Republic, Hungary, and Poland). UK adults experience less comprehensive care compared to children in their access to specialized clinics, frequency of cardiac and respiratory assessments, and access to professional physiotherapy. Access to the latter is especially poor when compared to other European adult cohorts. Although the total number of nights in hospital (planned and unplanned admissions) is lower among UK adults than elsewhere in Western Europe, social inclusion lags behind other Western European countries. We observe that attendance at specialized clinic is associated with more frequent cardiac and respiratory assessments among adults, in line with international best practice. Attendance at such clinics in the UK, though comparable to other countries, is still far from universal. With an increasing adult population living with DMD, and cardiac and respiratory failure the leading causes of death in this population, we suggest the need for an urgent improvement in adult access to specialized clinics and to consistent, comprehensive best practice care.

Aims and objectivesTo identify the potential benefits of dementia specialist nursing and to inform the implementation of roles to support people with dementia during hospital admission.BackgroundExtended stays and adverse events mean that hospital admissions are costly for people with dementia, and patient experiences and outcomes can be poor. Specialist nurses have been identified as having potential to enhance care quality, reduce excess stays and reduce costs, but the evidence base for dementia specialist nurse roles has not previously been synthesised.DesignScoping review.Data sourcesCochrane Library, Campbell Collaboration, Clinical Evidence, Evidence-Based Medicine, York Centre for Reviews and Dissemination, PubMed, Medline, CINAHL and PsycInfo databases and internet searches and personal libraries/expert consultation to identify grey literature.MethodsInitial scoping searches were used to inform more focused systematic searches. Studies directly evaluating dementia nurse specialist roles or giving evidence of effectiveness of interventions/services that could be delivered by them to improve core outcomes were identified by one reviewer and verified by a second reviewer.ResultsWhile direct evidence for the effectiveness of these roles is lacking, a number of areas were identified in which a nurse specialist role could make a contribution, including preventing adverse events and improving patient experiences and outcomes. There is a considerable body of evidence for the effectiveness of these interventions although the volume of evidence for specific interventions is not always significant.ConclusionsThe evidence indicates that a skilled dementia specialist nurse, undertaking a clearly defined role, and working directly with people with dementia and their carers for a significant proportion of the time, could benefit people with dementia in hospitals and their family carers.Relevance to clinical practiceClear guidance for the development and implementation of dementia specialist nurse roles in acute hospital settings.