Search

Abstract Aims Caregivers rate improved communication ability as one of the most desired outcomes for successful interventions for individuals with Angelman syndrome (AS). When measuring communication ability in clinical trials, the reliability of such measures is critical for detecting significant changes over time. This study examined the reliability of the Observed-Reported Communication Ability (ORCA) measure completed by caregivers of individuals with AS. Methods The ORCA measure was completed by 249 caregivers with 170 caregivers completing the ORCA measure again after 5–12 days. Generalizability theory was used to examine the following sources of measurement error in ORCA scores: concepts, subdomains, assessment points, and the interactions among those facets and the object of measurement: communication ability. Three generalizability studies were conducted to understand the reliability of the ORCA measure for different measurement designs. Decision studies were carried out to demonstrate the optimization of measurement procedures of the ORCA measure. Results G and Phi coefficients of the original measurement design exceeded the 0.80 threshold considered sufficiently reliable to make relative and absolute decisions about the communication ability of individuals with AS based on their caregivers’ observed scores. The optimization procedures indicated that increasing the number of communication concepts and/or assessment points leads to more reliable estimates of communication. Conclusion The ORCA measure was able to reliably distinguish different levels of communication ability among individuals with AS. Multiple assessment points and or more concepts would provide more precise estimates of an individual’s communication ability but at the cost of survey fatigue.

BackgroundThe World Health Organization (WHO) recommends that outpatient people living with HIV (PLHIV) undergo tuberculosis screening with the WHO four-symptom screen (W4SS) or C-reactive protein (CRP) (5 mg·L-1 cut-off) followed by confirmatory testing if screen positive. We conducted an individual participant data meta-analysis to determine the performance of WHO-recommended screening tools and two newly developed clinical prediction models (CPMs).MethodsFollowing a systematic review, we identified studies that recruited adult outpatient PLHIV irrespective of tuberculosis signs and symptoms or with a positive W4SS, evaluated CRP and collected sputum for culture. We used logistic regression to develop an extended CPM (which included CRP and other predictors) and a CRP-only CPM. We used internal-external cross-validation to evaluate performance.ResultsWe pooled data from eight cohorts (n=4315 participants). The extended CPM had excellent discrimination (C-statistic 0.81); the CRP-only CPM had similar discrimination. The C-statistics for WHO-recommended tools were lower. Both CPMs had equivalent or higher net benefit compared with the WHO-recommended tools. Compared with both CPMs, CRP (5 mg·L-1 cut-off) had equivalent net benefit across a clinically useful range of threshold probabilities, while the W4SS had a lower net benefit. The W4SS would capture 91% of tuberculosis cases and require confirmatory testing for 78% of participants. CRP (5 mg·L-1 cut-off), the extended CPM (4.2% threshold) and the CRP-only CPM (3.6% threshold) would capture similar percentages of cases but reduce confirmatory tests required by 24, 27 and 36%, respectively.ConclusionsCRP sets the standard for tuberculosis screening among outpatient PLHIV. The choice between using CRP at 5 mg·L-1 cut-off or in a CPM depends on available resources.

With student and staff wellbeing a growing concern, several authors have asked whether existing data might help institutions provide better support. By analogy with the established field of Learning Analytics, this might involve identifying causes of stress, improving access to information for those who need it, suggesting options, providing rapid feedback, even early warning of problems. But just investigating the possibility of such uses can create significant risks for individuals: feelings of creepiness or surveillance making wellbeing worse, inappropriate data visibility destroying trust, assessments or interventions becoming self-fulfilling prophecies. To help institutions decide whether and how to explore this area, and to reassure individuals that this is being done safely, we propose a Wellbeing Analytics Code of Practice. This starts from an existing Learning Analytics Code, confirms that its concerns and mitigations remain relevant, and adds additional safeguards and tools for the wellbeing context. These are derived from a detailed analysis of European and UK data protection law, extracting all rules and safeguards mentioned in relation to health data. We also develop context-specific tools for managing risk and evaluating data sources. Early feedback suggests that these documents will indeed increase confidence that this important area can be safely explored.

This study focused on changes in the self-efficacy of 48 men and women pre-service teachers in a Thai computer Teacher Education program. Their self-efficacy levels were measured before and after attending the Pre-service Teacher Support System (PTSS). A shorter version of the Teacher Sense of Efficacy Scale and assessment of the desire to become a teacher were used to collect self-efficacy, PTSS questionnaires, logbooks, and interviews. PTSS is a program developed to assist students with self-efficacy, motivation, and the desire to become teachers. The results show a statistical increase in self-efficacy. The PTSS program designed for pre-service teachers to exchange teaching experiences and techniques they gained during practicum training. The PTSS has resulted in an increase in self-efficacy after attending PTSS sessions with personalized implications, which indicated the support system could help student teachers.

This survey aimed to acquire and generate significant information on coffee cultivation in high and low elevations to support agriculture during climate change. This survey dataset helps understand coffee cultivation in highland and lowland areas with diverse climates and environmental conditions for coffee researchers to use this data to improvecultivation and production techniques. In the business scope, this dataset provides a critical vision on the value proposition of the coffee business to maintain conservation and wealth creation of the coffee chain. Similarly, coffee chains can use this data as an example to assess sustainability and carbon literacy. The structured interviews and field trips were conducted at coffee plantations in southern and northern Thailand. The transcript results were manually coded for thematic analysis. This dataset offers insights into anthropogenic plant migration and plant distribution for researchers and academics to use as a valuable resource and good reference in agricultural and biodiversity research. Today, agriculture faces many challenges, such as climate change, water shortage, and improper land management. This information on coffee cultivation at high and low altitudes may help others grow crops in ever-changing climates.

Background Social prescribing link workers have become part of primary health care in recent years. They help patients to recognise non-medical factors affecting their health and identify sources of support, often in the voluntary, community and social enterprise sector. They form part of wider work to strengthen person-centred care, which actively seeks to engage individuals in decision-making about their health, taking into account their medical, social, psychological, financial and spiritual circumstances. Objective To understand how buy-in to social prescribing and the link worker role is established for a patient, and how this relates to person-centred care. Design A realist evaluation. Setting Patients engaging with link workers in seven different parts of England were involved. Methods As part of data collection, we observed link workers interacting with 35 patients. We also interviewed 61 patients and re-interviewed 41 of them 9–12 months later. Data were coded and developed into context–mechanism–outcome configurations, which were used to produce a programme theory. Results Data highlighted how patients might be uncertain about the link worker role but agree to a referral as they sought assistance with their non-medical issues. Patients talked about experiencing a sense of hope through the trust they developed in a link worker. This trust was established through the communication skills and knowledge demonstrated by a link worker, and by their ability to act as an anchor point when required – a reliable, consistent source of support to whom patients could offload. The link worker role also involved connecting patients to external support, which called for sensitivity around how ready someone was to move forward; this was shaped by a patient’s motivation but also their capacity to make changes given other demands in their life. Connecting patients to external support could be affected by structural factors outside the link workers’ control (e.g. housing options or employment opportunities). Limitations We did not interview patients who had rejected the offer of social prescribing, and most had a positive view of meeting with a link worker. Conclusions Person-centred care is engendered by link workers through their skills, knowledge and ability to respond to the individual readiness of patients to engage with external support. It can be curtailed by structural factors outside link workers’ sphere of control, such as access to housing or caring responsibilities of patients. This can hinder patients’ ability to ‘connect to’, leaving link workers to continue ‘connecting with’ patients as they act as an anchor point. Future work Exploration is required of factors affecting patients who interact with a link worker but do not access external support. Longitudinal work with a cohort of patients, speaking to them on a regular basis, may provide further understanding in this respect. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR130247. Plain language summary People’s health and well-being can be affected by non-medical issues (e.g. loneliness, money worries, housing problems). Social prescribing helps people with these issues by connecting them to support, often in the voluntary-community sector. Link workers are key to social prescribing. They listen to people talk about non-medical issues affecting how they feel physically and/or psychologically. They also connect people to external support – such as a befriending service, volunteering opportunities, organisations that give advice on money/housing, or other community groups. It is an important role, but we need to know more about how link workers work best, which our study set out to do. In our study, we collected data around seven link workers in different areas of England. As part of data collection, we interviewed 61 patients and re-interviewed 41 of them 9–12 months later. We also watched 35 patients meeting with a link worker. We found that patients were often unsure about what to expect when a doctor referred them to a link worker. However, they hoped this person could help them with their non-medical issues. When link workers were warm, non-judgmental and listened, patients were more likely to trust them. This trust was increased when link workers shared knowledge of and directed patients towards options in the community that could support their non-medical issues. Patients thought it was important for link workers to be a consistent source of support, who did not push them to do things they were not ready to try. Our research provides an insight into how link workers can provide a person-centred approach when supporting patients. This means that the needs, values and individual situation of patients take priority. It calls for an equal partnership to be created between a patient and link worker in deciding how to address the former’s non-medical issues.

As social, environmental, climate change, and public health challenges mount, there is growing recognition that many of the roots of these con­temporary crises are to be found in the nature and trajectory of the dominant food and agricultural systems. Consequently, a growing number of Australian civil society organizations (CSOs) seek to engage in processes of food system governance to address concerns of health and wellbeing, sustainability, and resilience. This paper summa­rizes a case study that explored the characteristics, values, and activities of seven food-related CSOs and identified the factors that enable or hinder their work. The results revealed that while the abil­ity of CSOs to influence food system governance has been modest to date, some progress is being made, particularly regarding food systems govern­ance processes at the local government level, point­ing to the possibility of more participatory forms of local food system governance developing.

Background Social prescribing addresses non-medical factors affecting health and well-being. Link workers are key to its delivery by connecting people to relevant support, often in the voluntary, community and social enterprise sector. Funding from the National Health Service means that link workers are becoming a common part of primary care in England. Objective To explore and understand the implementation of link workers in primary care in England. Design A realist evaluation addressed the question – When implementing link workers in primary care to sustain outcomes – what works, for whom, why and in what circumstances? Setting Link workers and staff associated with seven primary care sites across England. Methods Researchers spent 3 weeks with each link worker, going to meetings with them, watching them interact with patients, with healthcare staff and with voluntary, community and social enterprise organisations. In addition, interviews were conducted with 61 patients and 93 professionals (voluntary, community and social enterprise representatives and healthcare staff, including link workers). Follow-up interviews were conducted with 41 patients and with link workers 9–12 months later. Data were coded and developed into statements to identify how context around the link worker triggers mechanisms that lead to intended and unintended outcomes. Results We found that link workers exercise micro-discretions in their role – actions and advice-giving based on personal judgement of a situation, which may not always reflect explicit guidance or protocols. Our analysis highlighted that micro-discretions engender positive connections (with patients, healthcare staff, the voluntary, community and social enterprise sector) and promote buy-in to the link worker role in primary care. Micro-discretions supported delivery of person-centred care and enhanced job satisfaction. Data also highlighted that lack of boundaries could place link workers at risk of overstepping their remit. Limitations Our research focused on link workers attached to primary care; findings may not be applicable to those working in other settings. Data were collected around seven link worker cases, who were selected purposively for variation in terms of geographical spread and how/by whom link workers were employed. However, these link workers were predominately white females. Conclusions Enabling link workers to exercise micro-discretions allows for responsiveness to individual patient needs but can result in uncertainty and to link workers feeling overstretched. Future work Poor link worker retention may, in part, be associated with a lack of clarity around their role. Research to explore how this shapes intention to leave their job is being conducted by authors of this paper. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR130247. Plain language summary Problems in life affecting people’s health and well-being cannot always be fixed with medication. For example, loneliness can lower people’s mood, or worries about money can cause them to feel anxious. Social prescribing link workers are employed to support individuals with these ‘non-medical’ issues. They listen to people to find out about them and their circumstances. They may connect them to community groups, organisations or services, or help them get advice about things like benefits or housing. Our study explored how link workers are being implemented in primary care in England. We studied seven link workers based in different parts of England. We spent 3 weeks with each link worker, observing them at their workplace. We also interviewed these link workers and people they worked with; this included 61 patients, 61 primary care staff, 5 other link workers and 20 individuals from the voluntary or community sector. We found big differences in what link workers did in their roles; in how long they saw patients for and how often, how many patients they were supporting at one time, their professional and personal backgrounds, whether they worked in a practice alone or were part of a bigger team of people delivering social prescribing. Link workers had varying levels of flexibility (or discretion) in their jobs; this allowed them to support patients’ individual needs. Such flexibility gave them job satisfaction as they were able to use their judgement about how to work with patients to provide person-centred support. However, if this went too far – and link workers had too few boundaries and not enough guidance – they ended up feeling overwhelmed by their job.

Introduction Very preterm babies are at risk of poor neurodevelopmental outcomes and death. Intraventricular haemorrhage (IVH) after birth is the most prevalent cause of this. Birth by caesarean section may protect against IVH in very preterm babies, but the evidence is limited. The aim is to identify and obtain the quantitative evidence needed to inform a future definitive clinical trial to determine the optimal mode of delivery in preterm birth.Methods and analysis We will use three broad workstreams (WS) to answer complementary questions. WSs 1 and 2 involve the analysis of routinely recorded national clinical data held in an established research database. In WS1 (October 2023–March 2024), we will use conventional methods to identify what is needed to undertake a trial: the population of interest, areas of equipoise and a plausible range of effect sizes. In WS2 (April 2024–October 2024), using an emulated target trial framework, we will attempt to make inferences about the treatment effect from such a future trial and will identify potential challenges in recruitment and estimate likely ‘intention-to-treat’ versus ‘per-protocol’ profiles; these analyses will also be useful for power calculations for future possible trials. In WS3 (October 2024–March 2025), we will convene a consensus meeting with key stakeholders, supported by a clinical trials unit, to develop a multicentre clinical trial to identify the optimal mode of birth for preterm deliveries.Ethics and dissemination In this study, we will use deidentified data held in the National Neonatal Research Database (NNRD), an established national population database; parents can opt out of their baby’s data being held in the NNRD. HRA/Health and Care Research Wales and National Health Service (NHS) study-specific Research Ethics Committee approval (London—Queen Square Research Ethics Committee) (Ref: 23/LO/0826) ethical approval has been obtained. Key outputs of the PRECIOUS (PREterm Caesarean/vaginal birth and IVH/OUutcomeS) study include the identification of the data, and accordingly of the multidisciplinary team required, to develop, gain funding and complete, a clinical trial to definitively identify the optimal mode of delivery for preterm infants and their mothers.

Climate change has driven agriculture to alter farming methods for food production. This paper presents a new concept for monitoring, acquisition, management, analysis, and synthesis of ecological data, which captures the environmental determinants and direct gradients suited to a particular requirement for specific plant cultivation and sustainable agriculture. The purpose of this study is to investigate a smart seablite cultivation system. A novel digital agricultural method was developed and applied to digitised seablite cultivation. Machine learning was used to predict the future growth conditions of plants (seablites). The study identified the illustrative maps of seablite origins, a conceptual seablite smart farming model, essential factors for growing seablite, a digital circuit for cultivating seablite, and digital data of seablite growth phases comprised the digital data. The findings indicate that: (1) An indicator of soil salinity is a quantity of sodium chloride extracted from a seablite sample indicating its origin of environmental determinants. (2) Saline soil, saline water, pH, moisture, temperature, and sunlight are essential factors for seablite development. These factors are dependent on climate change and were measured using a smart seablite cultivation system. (3) Digital circuits of seablite cultivation provide a better understanding of the relationship between the essential factors for seablite growth and seablite growth phases. (4) Deep neural networks outperformed vector machines, with 86% accuracy at predicting future growth of seablites. Therefore, this finding showed that the essential seablite development factors can be manipulated as key controllers for agriculture in response to climate change and agriculture can be planned. Basic digitisation of specific plants aids plant migration. Digital agriculture is an important practice for agroecosystems.

Summary: A growing number of studies have applied evolutionary and ecological principles to understanding cancer. However, few such studies have examined whether phenotypic plasticity––the ability of a single individual or genome to respond differently to different environmental circumstances––can impact the origin and spread of cancer. Here, we propose the adaptive horizontal transmission hypothesis to explain how flexible decision-making by selfish genetic elements can cause them to spread from the genome of their original host into the genomes of other hosts through the evolution of transmissible cancers. Specifically, we hypothesize that such cancers appear when the likelihood of successful vertical transmission is sufficiently low relative to the likelihood of successful horizontal transmission. We develop an evolutionary optimization model of this hypothesis, highlight empirical findings that support it, and offer suggestions for future research. Generally, phenotypically plastic selfish genetic elements might play an important role in the evolution of transmissible cancers.

Adopting both a self-determination theory perspective and a proactive, asset-oriented approach to coping with stressors, we propose a hypothesized model to explain physical education students' year-long development of course-specific grit-perseverance (Study 1) and mental toughness (Study 2). In both studies, we used a randomized controlled trial research design with longitudinally assessed dependent measures (four waves) to test a hypothesized model in which teacher participation in an autonomy-supportive teaching workshop (experimental condition) would increase students' T2 perceived autonomy-supportive teaching and T2 perceived autonomy-supportive classmates, both of which would increase T3 need satisfaction, which would then explain longitudinal gains in students' T4 grit-perseverance (Study 1) and mental toughness (Study 2). In both Study 1 (57 teachers, 3,147 students) and Study 2 (38 teachers, 2,057 students), a multilevel structural equation modeling analysis showed that the hypothesized model fit the data very well. We conclude that the developmental roots of grit-perseverance and mental toughness can emerge proactively out of the asset-oriented experiences of interpersonal support and psychological need satisfaction that are central to self-determination theory. [ABSTRACT FROM AUTHOR]

SummaryLeveraging local ancestry and haplotype information in genome-wide association studies and downstream analyses can improve the utility of genomics for individuals from diverse and recently admixed ancestries. However, most existing simulation, visualization and variant analysis frameworks are based on variant-level analysis and do not automatically handle these features. We present haptools, an open-source toolkit for performing local ancestry aware and haplotype-based analysis of complex traits. Haptools supports fast simulation of admixed genomes, visualization of admixture tracks, simulation of haplotype- and local ancestry-specific phenotype effects and a variety of file operations and statistics computed in a haplotype-aware manner.Availability and implementationHaptools is freely available at https://github.com/cast-genomics/haptools.DocumentationDetailed documentation is available at https://haptools.readthedocs.io.Supplementary informationSupplementary data are available at Bioinformatics online.

Primary care (PC) is a unique clinical specialty and research discipline with its own perspectives and methods. Research in this field uses varied research methods and study designs to investigate myriad topics. The diversity of PC presents challenges for reporting, and despite the proliferation of reporting guidelines, none focuses specifically on the needs of PC. The Consensus Reporting Items for Studies in Primary Care (CRISP) Checklist guides reporting of PC research to include the information needed by the diverse PC community, including practitioners, patients, and communities. CRISP complements current guidelines to enhance the reporting, dissemination, and application of PC research findings and results. Prior CRISP studies documented opportunities to improve research reporting in this field. Our surveys of the international, interdisciplinary, and interprofessional PC community identified essential items to include in PC research reports. A 2-round Delphi study identified a consensus list of items considered necessary. The CRISP Checklist contains 24 items that describe the research team, patients, study participants, health conditions, clinical encounters, care teams, interventions, study measures, settings of care, and implementation of findings/results in PC. Not every item applies to every study design or topic. The CRISP guidelines inform the design and reporting of (1) studies done by PC researchers, (2) studies done by other investigators in PC populations and settings, and (3) studies intended for application in PC practice. Improved reporting of the context of the clinical services and the process of research is critical to interpreting study findings/results and applying them to diverse populations and varied settings in PC. Key words: guidelines; research report; checklist; primary care; research; consensus; stakeholder participation; Delphi studies; research impact; research design; surveys and questionnaires; authors; editors; reviewers; article; publishing; journals, INTRODUCTION Researchers, journals, and research users across many fields recognize the need to improve research reporting (1,2) and have developed research reporting guidelines to assist researchers. Many guidelines have been [...]

School victimization issues remain largely unresolved due to over-reliance on unidimensional conceptions of victimization and data from a few developed OECD countries. Thus, support for cross-national generalizability over multiple victimization components (relational, verbal, and physical) is weak. Our substantive-methodological synergy tests the cross-national generalizability of a three-component model (594,196 fifteen-year-olds; nationally-representative samples from 77 countries) compared to competing (unidimensional and two-component) victimization models. We demonstrate the superior explanatory power of the three-component model--goodness-of-fit, component differentiation, and discriminant validity of the three components concerning gender differences, paradoxical anti-bullying attitudes (the Pro-Bully Paradox) whereby victims are more supportive of bullies than of other victims, and multiple indicators of well-being. For example, gender differences varied significantly across the three components, and all 13 well-being indicators were more strongly related to verbal and particularly relational victimization than physical victimization. Collapsing the three components into one or two components undermined discriminant validity. Cross-nationally, systematic differences emerged across the three victimization components regarding country-level means, gender differences, national development, and cultural values. These findings across countries support a tripartite model in which the three components of victimization--relational, verbal, and physical--relate differently to key outcomes. Thus, these findings advance victimization theory and have implications for policy, practice, and intervention. We also discuss directions for further research: the need for simultaneous evaluation of multiple, parallel components of victimization and bullying, theoretical definitions of bullying and victimization and their implications for measurement, conceptual bases of global victimization indices, cyberbullying, anti-bullying policies, and capitalizing on anti-bullying attitudes.

There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS[greater than or equal to]2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.

Communication deficits have a substantial impact on quality of life for individuals with Angelman syndrome (AS) and their families, but limited qualitative work exists to support the necessary content of measures aiming to assess communication for these individuals. Following best practices for concept elicitation studies, we conducted individual qualitative interviews with caregivers and clinicians to elicit meaningful aspects of communication for individuals with AS. Caregivers were able to discuss their child's specific communication behaviors within a large number of expressive, receptive, and pragmatic functions via numerous symbolic and non-symbolic modalities. These results aligned well with published literature on communication in AS and will be used to inform the design of a novel caregiver-reported measure. Future studies on communication in individuals with AS should focus on gathering quantitative data from large samples of diverse caregivers, which would allow for estimations of the frequency of specific behaviors across the population.

Disparities in care, treatment-related toxicity and health-related quality of life (HRQoL) for adolescents and young adults (AYAs, aged 15-39 years) with cancer are under-addressed partly because of limited collection of patient-reported outcomes (PROs) in cancer clinical trials (CCTs). The AYA years include key developmental milestones distinct from younger and older patients, and cancer interrupts attainment of critical life goals. Lack of consensus on a standardized approach to assess HRQoL and treatment-related toxicity in AYA CCTs has limited the ability to improve patient outcomes. The National Cancer Institutes Clinical Trials Network AYA PRO Task Force was assembled to reach consensus on a core set of PROs and foster its integration into AYA CCTs. Eight key considerations for selecting the core PRO AYA battery components were identified: relevance to AYAs; importance of constructs across the age continuum; prioritization of validated measures; availability of measures without licensing fees; availability in multiple languages; applicability to different cancer types and treatments; ability to measure different HRQoL domains and toxicities; and minimized burden on patients and sites. The Task Force used a modified Delphi approach to identify key components of the PRO battery. The Patient-Reported Outcomes Measurement Information System (PROMIS) and the PRO Common Terminology Criteria for Adverse Events Measurement System met all criteria and were selected to assess HRQoL and treatment toxicity, respectively. Investigators are rapidly incorporating the recommendations of the Task Force into AYA trials. Inclusion of a standardized assessment of HRQoL and treatment toxicities in AYA CCTs is a vital first step to develop interventions to improve health outcomes for AYAs diagnosed with cancer.

BACKGROUND: The impact of undernutrition in dogs with protein-losing enteropathy (PLE) caused by inflammatory enteritis, intestinal lymphangiectasia, or both and which variables are most predictive of outcome are unknown. OBJECTIVES: Develop an undernutrition screening score (USS) for use at the time of diagnosis of PLE in dogs, which is predictive of outcome. ANIMALS: Fifty-seven dogs with PLE prospectively recruited from 3 referral hospitals in the United Kingdom. METHODS: An USS based on the presence and severity of 5 variables: appetite, weight loss, and body, muscle, and coat condition and scored out of 15, with higher scores reflecting worse undernutrition, was calculated at the time of diagnosis. Follow-up information was obtained for at least 6 months. RESULTS: Dogs that failed to achieve clinical remission within 6 months had higher USS at diagnosis compared with dogs that achieved remission (median, 7.5; range, 2-14 and median, 5; range, 0-14, respectively). The USS at diagnosis gave an area under the receiver operating characteristic curve (AUC) of 0.656 for predicting nonclinical remission within 6 months, whereas a score consisting of just epaxial muscle loss and coat condition resulted in a larger AUC of 0.728. CONCLUSIONS AND CLINICAL IMPORTANCE: Of the 5 variables assessed in the USS, a combination of epaxial muscle loss and coat condition was most predictive of not achieving clinical remission within 6 months in dogs with PLE. Additional studies will help determine the effect of changes in USS and the 5 associated variables after diagnosis on outcome variables in these dogs.

Integrated virus genomes (prophages) are commonly found in sequenced bacterial genomes but have rarely been described in detail for rhizobial genomes. Cupriavidus taiwanensis STM 6018 is a rhizobial Betaproteobacteria strain that was isolated in 2006 from a root nodule of a Mimosa pudica host in French Guiana, South America. Here we describe features of the genome of STM 6018, focusing on the characterization of two different types of prophages that have been identified in its genome. The draft genome of STM 6018 is 6,553,639 bp, and consists of 80 scaffolds, containing 5,864 protein-coding genes and 61 RNA genes. STM 6018 contains all the nodulation and nitrogen fixation gene clusters common to symbiotic Cupriavidus species; sharing >99.97% bp identity homology to the nod/nif/noeM gene clusters from C. taiwanensis LMG19424T and "Cupriavidus neocalidonicus" STM 6070. The STM 6018 genome contains the genomes of two prophages: one complete Mu-like capsular phage and one filamentous phage, which integrates into a putative dif site. This is the first characterization of a filamentous phage found within the genome of a rhizobial strain. Further examination of sequenced rhizobial genomes identified filamentous prophage sequences in several Beta-rhizobial strains but not in any Alphaproteobacterial rhizobia.

PurposeOur purpose was to describe the prevalence and predictors of symptom and function clusters in a diverse cohort of colorectal cancer survivors.MethodsWe used data from a cohort of 909 adult colorectal cancer survivors. Participants were surveyed at a median of 9 months after diagnosis to ascertain the co-occurrence of eight distinct symptom and functional domains. We used factor analysis to identify co-occurring domains and latent profile analysis (LPA) to identify subgroups of survivors with different symptom and function clusters. Multinomial logistic regression models were used to identify risk/protective factors.ResultsFactor analysis demonstrated a single underlying factor structure that included all eight health domains with depression and anxiety highly correlated (r = 0.87). The LPA identified three symptom and function clusters, with 30% of survivors in the low health-related quality of life (HRQOL) profile having the highest symptom burden and lowest functioning. In multivariable models, survivors more likely to be in the low HRQOL profile included being non-White, female, those with a history of cardiac or mental health conditions, and chemotherapy recipients. Survivors less likely to be in the low HRQOL profile included those with older age, greater financial well-being, and more spirituality.ConclusionNearly one-third of colorectal cancer survivors experienced a cluster of physical and psychosocial symptoms that co-occur with clinically relevant deficits in function.Implications for cancer survivorsImproving the identification of risk factors for having the highest symptom and lowest function profile can inform the development of clinical interventions to mitigate their adverse impact on cancer survivors' HRQOL.

Background Pancreatic cystic neoplasms (PCN) are considered premalignant conditions to pancreatic adenocarcinoma with varying degrees of cancerous potential. Management for individuals who do not require surgical treatment involves surveillance to assess for cancerous progression. Little is known about patients’ experience and the impact of living with surveillance for these lesions.Aims To explore the experiences of patients living with surveillance for PCNs.Methods Semi-structured qualitative interviews were conducted with patients under surveillance for pancreatic cystic neoplasms in the UK. Age, gender, time from surveillance and surveillance method were used to purposively sample the patient group. Data were analysed using reflexive thematic analysis.Results A PCN diagnosis is incidental and unexpected and for some, the beginning of a disruptive experience. How patients make sense of their PCN diagnosis is influenced by their existing understanding of pancreatic cancer, explanations from clinicians and the presence of coexisting health concerns. A lack of understanding of the diagnosis and its meaning for their future led to an overarching theme of uncertainty for the PCN population. Surveillance for PCN could be seen as a reminder of fears of PCN and cancer, or as an opportunity for reassurance.Conclusions Currently, individuals living with surveillance for PCNs experience uncertainty with a lack of support in making sense of a prognostically uncertain diagnosis with no immediate treatment. More research is needed to identify the needs of this population to make improvements to patient care and reduce negative experiences.

Objective To estimate the cost-effectiveness of craniotomy, compared with decompressive craniectomy (DC) in UK patients undergoing evacuation of acute subdural haematoma (ASDH).Design Economic evaluation undertaken using health resource use and outcome data from the 12-month multicentre, pragmatic, parallel-group, randomised, Randomised Evaluation of Surgery with Craniectomy for Patients Undergoing Evacuation-ASDH trial.Setting UK secondary care.Participants 248 UK patients undergoing surgery for traumatic ASDH were randomised to craniotomy (N=126) or DC (N=122).Interventions Surgical evacuation via craniotomy (bone flap replaced) or DC (bone flap left out with a view to replace later: cranioplasty surgery).Main outcome measures In the base-case analysis, costs were estimated from a National Health Service and Personal Social Services perspective. Outcomes were assessed via the quality-adjusted life-years (QALY) derived from the EuroQoL 5-Dimension 5-Level questionnaire (cost-utility analysis) and the Extended Glasgow Outcome Scale (GOSE) (cost-effectiveness analysis). Multiple imputation and regression analyses were conducted to estimate the mean incremental cost and effect of craniotomy compared with DC. The most cost-effective option was selected, irrespective of the level of statistical significance as is argued by economists.Results In the cost-utility analysis, the mean incremental cost of craniotomy compared with DC was estimated to be −£5520 (95% CI −£18 060 to £7020) with a mean QALY gain of 0.093 (95% CI 0.029 to 0.156). In the cost-effectiveness analysis, the mean incremental cost was estimated to be −£4536 (95% CI −£17 374 to £8301) with an OR of 1.682 (95% CI 0.995 to 2.842) for a favourable outcome on the GOSE.Conclusions In a UK population with traumatic ASDH, craniotomy was estimated to be cost-effective compared with DC: craniotomy was estimated to have a lower mean cost, higher mean QALY gain and higher probability of a more favourable outcome on the GOSE (though not all estimated differences between the two approaches were statistically significant).Ethics Ethical approval for the trial was obtained from the North West—Haydock Research Ethics Committee in the UK on 17 July 2014 (14/NW/1076).Trial registration number ISRCTN87370545.

Introduction A better understanding of the earliest stages of Alzheimer’s disease (AD) could expedite the development or administration of treatments. Large population biobanks hold the promise to identify individuals at an elevated risk of AD and related dementias based on health registry information. Here, we establish the protocol for an observational clinical recall and biomarker study called TWINGEN with the aim to identify individuals at high risk of AD by assessing cognition, health and AD-related biomarkers. Suitable candidates were identified and invited to participate in the new study among THL Biobank donors according to TWINGEN study criteria.Methods and analysis A multi-centre study (n=800) to obtain blood-based biomarkers, telephone-administered and web-based memory and cognitive parameters, questionnaire information on lifestyle, health and psychological factors, and accelerometer data for measures of physical activity, sedentary behaviour and sleep. A subcohort is being asked to participate in an in-person neuropsychological assessment (n=200) and wear an Oura ring (n=50). All participants in the TWINGEN study have genome-wide genotyping data and up to 48 years of follow-up data from the population-based older Finnish Twin Cohort (FTC) study of the University of Helsinki. The data collected in TWINGEN will be returned to THL Biobank from where it can later be requested for other biobank studies such as FinnGen that supported TWINGEN.Ethics and dissemination This recall study consists of FTC/THL Biobank/FinnGen participants whose data were acquired in accordance with the Finnish Biobank Act. The recruitment protocols followed the biobank protocols approved by Finnish Medicines Agency. The TWINGEN study plan was approved by the Ethics Committee of Hospital District of Helsinki and Uusimaa (number 16831/2022). THL Biobank approved the research plan with the permission no: THLBB2022_83.

We assessed the psychometric properties of the “providing validation” subscale of PedCOM measures for parents of children with vascular anomalies and adult patients. A total of 139 adult patients and 78 parents completed surveys. The mean score for patients was 3.7 (standard deviation 1.0), and for parents was 4.0 (standard deviation 0.9). “Providing validation” measures demonstrated high internal consistency and good model fit to a unidimensional model for both patients and parents using confirmatory factor analysis. The measures also demonstrated convergent validity with co-administered measures. This study demonstrated the validity of “providing validation” measures for parents and adult patients with vascular anomalies.