bluuebunny/crossref_metadata_2025_split huggingface dataset:
Observational longitudinal multicentre investigation of acute pancreatitis (GOULASH PLUS): follow-up of the GOULASH study, protocol
Authors: Mikó Alexandra , Erőss Bálint , Sarlós Patrícia , Hegyi Jr Péter , Márta Katalin , Pécsi Dániel , Vincze Áron , Bódis Beáta , Nemes Orsolya , Faluhelyi Nándor , Farkas Orsolya , Papp Róbert , Kelemen Dezső , Szentesi Andrea , Hegyi Eszter , Papp Mária , Czakó László , Izbéki Ferenc , Gajdán László , Novák János , Sahin-Tóth Miklós , Lerch Markus M , Neoptolemos John , Petersen Ole H , Hegyi Péter 
Published: September 2019

BackgroundAcute pancreatitis (AP) is an inflammatory condition that can lead to late consequences. Recurrent AP (RAP) develops in 20% of patients and chronic pancreatitis (CP) occurs in 7%–12.8%. However, we do not have sufficient information to establish an evidence-based statement to define early CP, or how to prevent its development.AimThe aim of this study was to understand the influencing factors and to determine which parameters should be measured or used as a biomarker to detect the early phase of CP.Methods/DesignThis is an observational prospective follow-up study of the GOULASH-trial (ISRTCN 63827758) in which (1) all severity of pancreatitis are included; (2) patients receive only therapeutic modalities which are accepted by the evidence based medicine (EBM) guideline; (3) whole blood, serum and plasma samples are stored in our biobank; and (4) large amount of variables are collected and kept in our electronic database including anamnestic data, physical examination, laboratory parameters, imaging, therapy and complications. Therefore, this fully characterised patient cohort are well suitable for this longitudinal follow-up study. Patients’ selection: patients enrolled in the GOULASH study will be offered to join to the longitudinal study. The follow-up will be at 1, 2, 3, 4, 5 and 6 years after the episode of AP. Anamnestic data will be collected by questionnaires: (1) diet history questionnaire, (2) 36-Item Short-Form Health Survey, (3) physical activity questionnaire and (4) stress questionnaire. Genetic tests will be performed for the genes associated with CP. The exocrine and endocrine pancreatic, liver and kidney functions will be determined by laboratory tests, stool sample analyses and imaging. Cost-effectiveness will be analysed to examine the relationship between events of interest and health-related quality of life or to explore subgroup differences.ConclusionThis study will provide information about the risk and influencing factors leading to CP and identify the most useful measurable parameters.Trial registration numberISRCTN63396106
Children and Young People’s Health Partnership (CYPHP) Evelina London model of care: protocol for an opportunistic cluster randomised controlled trial (cRCT) to assess child health outcomes, healthcare quality and health service use
Authors: Newham James Joseph , Forman Julia , Heys Michelle , Cousens Simon , Lemer Claire , Elsherbiny Mohamed , Satherley Rose-Marie , Lingam Raghu , Wolfe Ingrid 
Published: September 2019

IntroductionChildren and young people (CYP) in many high-income settings have poor healthcare outcomes, especially those with long-term conditions (LTCs). Emergency and outpatient hospital service use is increasing unsustainably. To address these problems, the Children and Young People’s Health Partnership (CYPHP) has developed and is evaluating an integrated model of care as part of a health systems strengthening programme across two boroughs of London, UK that are characterised by mixed ethnic populations and varying levels of deprivation. The CYPHP Evelina London model of care comprises proactive case-finding and triage, specialist clinics and transformative education and training for professionals working with CYP. Services are delivered by multidisciplinary health teams with an emphasis on increased coordination across primary, community and hospital settings and integration of physical and mental healthcare that accounts for the CYP’s social context.Methods and analysisThe phased roll out of the CYPHP Evelina London model allows an opportunistic population-based evaluation using a cluster randomised controlled trial design. Seventy general practices across two London boroughs, grouped into 23 clusters, were randomised to provide either the CYPHP model of care (n=11) or enhanced usual care (n=12).The evaluation will measure the impact of the CYPHP Evelina London model of care on child and parent health and well-being, healthcare quality and health service use up to 2 years postimplementation. A population-level evaluation will use routinely collected pseudonymised healthcare data to conduct a service-use analysis for all CYP registered with a participating general practice (n=~90 000) with the rate of non-elective admissions as the primary outcome. We will seek consent from a subset of this population, with specific conditions (target n=2138) to assess the impact on patient-reported outcomes using the Paediatric Quality of Life Inventory (PedsQL) and Warwick-Edinburgh Mental Well-Being Scale (WEBWMS) as, respectively, the child- and parent-related primary outcomes.Ethics and disseminationEthics approval obtained from South West-Cornwall & Plymouth Research Ethics Committee. Results will be submitted for publication in peer-reviewed journals. Findings will be generalisable to community-based models of care, especially in urban settings. Our process evaluation will identify barriers and enablers of implementation and delivery of care salient to the context and condition.Trial registration numberNCT03461848; Pre-results.
Effect of different ranges of systolic blood pressure on left ventricular structure and diastolic function in a Chinese population: a cross-sectional population-based Shunyi study
Authors: Yongtai Liu , Jinzhi Lai , Lixin Zhou , Feifei Zhai , Dingding Zhang , Zhuang Tian , Yanlin Zhu , Wei Chen , Hua Bai , Hui Wang , Yicheng Zhu , Liying Cui , Zhengyu Jin , Zhang Shuyang 
Published: September 2019

ObjectivesTo evaluate the effect of different ranges of systolic blood pressure (SBP) on left ventricular (LV) geometry and diastolic function in Chinese population.DesignCross-sectional study.SettingPeking Union Medical College Hospital in Beijing, China.ParticipantsAll inhabitants aged 35 years or older, living in five villages of Shunyi were invited. Exclusion criteria included individuals who declined participation, presence of moderate to severe valvular heart disease, persistent atrial fibrillation and suboptimal echocardiograms.InterventionsThe baseline data of 1051 participants were analysed. The relationship between SBP and LV geometric and diastolic function assessed by echocardiography was analysed after adjusting for conventional cardiac risk factors.ResultsThe adjusted value of SBP was independently associated with LV hypertrophy (LVH) and LV diastolic dysfunction (LVDDF) (all p<0.01). Setting individuals with SBP <120 mm Hg as the reference group (group 1), those with SBP between 120 mm Hg and 140 mm Hg (group 2) had higher risk odds of LVH and those with SBP ≥140 mm Hg (group 3) had higher risk odds of LVH and LVDDF (all p<0.01). With the increase of SBP, LV mass index (LVMI) and E/e′ stepwise increased and e′ stepwise decreased significantly from group 1 to 3 (all p<0.05). In the whole population, SBP was independently correlated with LVMI, LVEDD, Left Atrial Volume Index, e′, and E/e′ (all p<0.01).ConclusionsSBP was independently related to LVH and LVDDF, SBP between 120 and 140 mm Hg was independently related to worse LV remodelling and diastolic function, these findings indicated the potential benefit of intensive SBP control.
The dietary education trial in carbohydrate counting (DIET-CARB Study): study protocol for a randomised, parallel, open-label, intervention study comparing different approaches to dietary self-management in patients with type 1 diabetes
Authors: Ewers Bettina , Vilsbøll Tina , Andersen Henrik Ullits , Bruun Jens Meldgaard 
Published: September 2019

IntroductionClinical guidelines recommend that patients with type 1 diabetes (T1D) learn carbohydrate counting or similar methods to improve glycaemic control. Although systematic educating in carbohydrate counting is still not offered as standard-of-care for all patients on multiple daily injections (MDI) insulin therapy in outpatient diabetes clinics in Denmark. This may be due to the lack of evidence as to which educational methods are the most effective for training patients in carbohydrate counting. The objective of this study is to compare the effect of two different educational programmes in carbohydrate counting with the usual dietary care on glycaemic control in patients with T1D.Methods and analysisThe study is designed as a randomised controlled trial with a parallel-group design. The total study duration is 12 months with data collection at baseline, 6 and 12 months. We plan to include 231 Danish adult patients with T1D. Participants will be randomised to one of three dietician-led interventions: (1) a programme in basic carbohydrate counting, (2) a programme in advanced carbohydrate counting including an automated bolus calculator or (3) usual dietary care. The primary outcome is changes in glycated haemoglobin A1c or mean amplitude of glycaemic excursions from baseline to end of the intervention period (week 24) between and within each of the three study groups. Other outcome measures include changes in other parameters of plasma glucose variability (eg, time in range), body weight and composition, lipid profile, blood pressure, mathematical literacy skills, carbohydrate estimation accuracy, dietary intake, diet-related quality of life, perceived competencies in dietary management of diabetes and perceptions of an autonomy supportive dietician-led climate, physical activity and urinary biomarkers.Ethics and disseminationThe protocol has been approved by the Ethics Committee of the Capital Region, Copenhagen, Denmark. Study findings will be disseminated widely through peer-reviewed publications and conference presentations.Trial registration numberClinicalTrials.gov Registry (NCT03623113).
Stereotyping as a barrier to the social participation of older adults with low vision: a qualitative focus group study
Authors: Fraser Sarah , Beeman Irene , Southall Kenneth , Wittich Walter 
Published: September 2019

ObjectiveIn order to better understand the barriers that limit the social participation of older people with low vision, the aim of this study was to describe and clarify the factors that shape the social participation of older adults with vision loss.MethodsAs part of a study on rehabilitation access barriers, six qualitative focus groups were conducted in a private room in a hospital, with 21 individuals with low vision (aged 38–92 years) who had or had not accessed low vision services. During the focus groups, participants often spoke of the challenges they faced when interacting with people with ‘normal’ vision; this discussion led to a modification of the interview guide in order to capture barriers to social participation. Focus group discussions were audiotaped and transcribed, and content analysis was conducted.ResultsContent analysis revealed that personal as well as environmental factors influenced the social participation of older adults with low vision. Four themes emerged: 1) experiencing the onset of impairment and degenerating ability, 2) the physical environment, 3) attitudes and responses from others and 4) individual internal attitude and responses during social interactions. Lived and perceived stigma from the perspective of the insider (person living with low vision) interacting with an outsider (person with ‘normal’ vision) and difficult environmental contexts were described as barriers to social participation and optimal functioning.ConclusionAt a personal level, transitioning from an outsider to an insider influenced self-identity and social participation. Further, insiders experiencing stereotypes associated with older adults who are blind had a negative impact on their social participation. Findings highlight the importance of stigma and stereotyping in the lived experience of older adults with low vision. Stigma is persistent, but strategies to reduce stigma will ultimately facilitate the social participation of older adults with low vision.
Management and outcomes of gastrointestinal congenital anomalies in low, middle and high income countries: protocol for a multicentre, international, prospective cohort study
Authors: Wright Naomi Jane 
Published: September 2019

IntroductionCongenital anomalies are the fifth leading cause of death in children <5 years of age globally, contributing an estimated half a million deaths per year. Very limited literature exists from low and middle income countries (LMICs) where most of these deaths occur. The Global PaedSurg Research Collaboration aims to undertake the first multicentre, international, prospective cohort study of a selection of common congenital anomalies comparing management and outcomes between low, middle and high income countries (HICs) globally.Methods and analysisThe Global PaedSurg Research Collaboration consists of surgeons, paediatricians, anaesthetists and allied healthcare professionals involved in the surgical care of children globally. Collaborators will prospectively collect observational data on consecutive patients presenting for the first time, with one of seven common congenital anomalies (oesophageal atresia, congenital diaphragmatic hernia, intestinal atresia, gastroschisis, exomphalos, anorectal malformation and Hirschsprung's disease).Patient recruitment will be for a minimum of 1 month from October 2018 to April 2019 with a 30-day post-primary intervention follow-up period. Anonymous data will be collected on patient demographics, clinical status, interventions and outcomes using REDCap. Collaborators will complete a survey regarding the resources and facilities for neonatal and paediatric surgery at their centre.The primary outcome is all-cause in-hospital mortality. Secondary outcomes include the occurrence of post-operative complications. Chi-squared analysis will be used to compare mortality between LMICs and HICs. Multilevel, multivariate logistic regression analysis will be undertaken to identify patient-level and hospital-level factors affecting outcomes with adjustment for confounding factors.Ethics and disseminationAt the host centre, this study is classified as an audit not requiring ethical approval. All participating collaborators have gained local approval in accordance with their institutional ethical regulations. Collaborators will be encouraged to present the results locally, nationally and internationally. The results will be submitted for open access publication in a peer reviewed journal.Trial registration numberNCT03666767
‘What happens when I can no longer care?’ Informal carers’ concerns about facing their own illness or death: a qualitative focus group study
Authors: Greenwood Nan , Pound Carole , Brearley Sally 
Published: September 2019

ObjectivesOlder informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring.DesignQualitative with four focus groups.SettingGreater London, UK.Participants28 older carers (70+ years) recruited from the voluntary sector participated in this study. Most were women and many were spouses caring for partners with age-related conditions such as dementia, arthritis and visual impairment. Nearly a third were parents of adult children with severe physical or cognitive disabilities.FindingsThematic analysis identified two main aspects for carers when contemplating the future—when they are unable to care in the short term or long term if they die or can no longer manage. Themes included the following: the impact of age, health conditions and relationships on future planning; anxiety about future care; carers’ ambivalence and challenges in broaching the subject; interventions that might help older carers talk about and plan for the future of those they care for.ConclusionsServices need to be open to talking about this difficult topic. Our findings suggest that frank discussions about when older carers cannot care and having plans in place, whether these are financial or address other practical issues, makes it easier for all concerned. However, this issue is not easily broached and its timing and ways to access this support must be carefully and individually gauged. Future research with more diverse demographic groups is needed to improve understanding of these carers’ perspectives. Research is also needed to develop interventions to support older carers to talk about and plan for the future.
Risk factors forStaphylococcus aureusbacteremia in patients with rheumatoid arthritis and incidence compared with the general population: protocol for a Danish nationwide observational cohort study
Authors: Dieperink Sabine Sparre , Glintborg Bente , Oestergaard Louise Bruun , Nørgaard Mette , Benfield Thomas , Mehnert Frank , Petersen Andreas , Hetland Merete Lund 
Published: September 2019

IntroductionStaphylococcus aureusbacteremia (SAB) is an invasive infection with high mortality and morbidity. Rheumatoid arthritis (RA) is associated with increased risk of infections due to the disease per se and the use of antirheumatic treatments. Few minor studies have previously investigated risk of SAB in patients with RA and indicated increased risk compared with the general population. This nationwide observational study aims to investigate incidence of and risk factors for SAB in adult patients with RA compared with the general population. The effect of disease characteristics (eg, joint erosions, disease duration and activity), different antirheumatic treatments and smoking on SAB risk will be evaluated.Methods and analysisAll adults (>18 years of age) alive and living in Denmark in 1996–2017 will be identified in The Danish Civil Registration System. Incident patients with RA are identified in the Danish National Patient Registry (DNPR) and the nationwide rheumatology registry, DANBIO, in which information on, for example, antirheumatic treatments, disease characteristics and smoking is collected prospectively in routine care. Information on comorbidities, invasive procedures and prescribed drugs are identified in the DNPR and in The Register of Medicinal Product Statistics. Socioeconomic status is evaluated in national registers on income and education. Incident cases of first-time SAB are identified in The Danish National SAB Database. All registers are linked on an individual level by unique civil registration numbers. Incidence rates and incidence rate ratios will be analysed using Poisson regression models and the impact of possible risk factors will be evaluated.Ethics and disseminationAll data will be handled in accordance with the General Data Protection Regulation (EU) 2016/679. No ethical approval is necessary in Denmark when handling registry data only. The results will be presented in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology initiative in international peer-reviewed journals and at medical conferences.Trial registration numberNCT03908086.
Physicians’ perceptions of palliative sedation for existential suffering: a systematic review
Authors: Rodrigues Paulo , Menten Johan , Gastmans Chris 
Published: September 2019

BackgroundPalliative sedation for existential suffering (PS-ES) is a controversial clinical intervention. Empirical studies about physicians’ perceptions do not converge in a clear position and current clinical practice guidelines do not agree either regarding this kind of intervention.AimTo gain deeper insight into physicians’ perceptions of PS-ES, the factors influencing it, the conditions for implementing it and the alternatives to it.DesignSystematic review of qualitative, quantitative and mixed-methods studies following thePeer Review Electronic Search StrategiesandPreferred Reporting Items for Systematic Reviews and Meta-analysesprotocols; quality appraisal and thematic synthesis methodology.Data sourcesSeven electronic databases (PubMed, CINAHL, Embase, Scopus, Web of Science, PsycINFO, PsycARTICLES) were exhaustively searched from inception through March 2019. Two reviewers screened paper titles, abstracts and full texts. We included only peer-reviewed journal articles published in English, French, German, Dutch, Spanish, Italian or Portuguese that focused on physicians’ perceptions of PS-ES.ResultsThe search yielded 17 publications published between 2002 and 2017. Physicians do not hold clear views or agree if and when PS-ES is appropriate. Case-related and individual-related factors that influenced physicians’ perceptions were identified. There is still no consensus regarding criteria to distinguish between necessary and sufficient conditions for invoking PS-ES. Some alternatives to PS-ES were identified.ConclusionsTo date, there is still no consensus on physicians’ perceptions of PS-ES. Further research is necessary to understand factors that influence physicians’ perceptions and philosophical-ethical presuppositions underlying this perceptions.
Risk factors for blood‐contaminated cerebrospinal fluid collection in dogs
Authors: Nagendran Aran , Sanchez‐Masian Daniel , Bersan Erika , Cooper Camilla Jayne , Gonçalves Rita 
Published: September 2019

ObjectiveTo determine the risk factors for blood contamination during cerebrospinal fluid (CSF) collection in dogs.Study design and methodsThis is a prospective study of 170 CSF samples. Data collected included signalment of the patient, body condition score, site of CSF collection (cerebellomedullary cistern (CMC) or lumbar cistern (LC)), number of attempts, clinician expertise, final diagnosis, time of day, skull conformation and day of the week. Analysis of the CSF samples was then performed, and the presence of blood contamination (red blood cells >500/µl) was recorded. Logistic regression was used to quantify the association of potential risk factors of the procedure. Multivariate analysis was performed on the variables that were statistically significant.ResultsOf the 170 CSF samples, 53 per cent were collected from the CMC (n=90) and 47 per cent from the LC (n=80). Blood contamination was seen in 20 per cent (n=34) of the samples, 8.9 per cent (n=8) in CMC and 32.5 per cent (n=26) in LC samples. Increased odds of obtaining a contaminated CSF sample were associated with lower level of clinician expertise (odds ratio: 2.5; 95 per cent confidence interval: 0.9–6.7; P=0.046) and with LC versus CMC collection site (odds ratio: 8.1; 95 per cent confidence interval: 2.1–12.9; P=0.001).Clinical significanceThere is increased likelihood of blood contamination when collecting CSF from the LC compared with the CMC site. Increased clinician experience reduced the risk of CSF blood contamination, but none of the other variables examined significantly influenced this.
Epigenetic Control of Fatty-Acid Metabolism Sustains Glioma Stem Cells
Authors: Affronti Hayley C. , Wellen Kathryn E. 
Published: September 2019

AbstractSummary:In this issue of Cancer Discovery, Gimple and colleagues examine superenhancers in glioblastoma and glioma stem cells (GSC), identifying one which promotes expression of ELOVL2, an enzyme in polyunsaturated fatty acid (PUFA) synthesis. They find that ELOVL2 products help maintain cell membrane organization and EGFR signaling in GSCs, and that targeting PUFA metabolism along with EGFR offers a potential novel therapeutic strategy for glioblastoma.See related article by Gimple et al., p. 1248.