bluuebunny/crossref_metadata_2025_split huggingface dataset:
The Engaged Child in Occupational Therapy
Authors: D’Arrigo Rachel G. , Copley Jodie A. , Poulsen Anne A. , Ziviani Jenny 
Published: February 2020

Background. Achieving optimal outcomes for children in occupational therapy settings is influenced, in part, by their engagement. The nature of child engagement from the occupational therapy perspective remains relatively unexplored. Method. A qualitative research methodology was adopted, using an interpretive description approach. Thirty-two occupational therapists participated in five focus groups and six individual interviews that were thematically analyzed. Findings. Four themes emerged from the data: (i) signs of child engagement and disengagement; (ii) it’s about the child feeling safe; (iii) a sense of meaning and purpose; and (iv) service and therapist factors influencing child engagement. Implications. Helping the child feel safe; providing meaningful experiences; and being flexible and responsive were key means of connecting with, and supporting, child engagement. Strategies occupational therapists reportedly used to engage the child aligned with the tenets of self-determination theory (autonomy, relatedness, and competence).
Health-related quality of life in patients with advanced cancer who express a wish to hasten death: A comparative study
Authors: Crespo Iris , Rodríguez-Prat Andrea , Monforte-Royo Cristina , Wilson Keith G , Porta-Sales Josep , Balaguer Albert 
Published: February 2020

Background: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life. Aim: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics. Design: A comparative cross-sectional study. Participants: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores ⩾1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale. Results: Patients with a wish to hasten death had worse emotional functioning ( p < 0.001), greater perceived loss of dignity ( p < 0.001) and lower self-efficacy ( p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death ( p = 0.023) and marginally worse for the case group than the control group ( p = 0.052). Conclusion: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.
Slow-pull capillary technique versus suction technique in endobronchial ultrasound-guided transbronchial needle aspiration for diagnosing diseases involving hilar and mediastinal lymph node enlargement
Authors: He Xin , Wu Yanjun , Wang Haoyan , Yu Ganggang , Xu Bo , Jia Nan , Yao Zhigang 
Published: February 2020

Background: Endobronchial ultrasound-guided transbronchial needle aspiration (EBUS-TBNA) is a widely used, safe, and accurate technique for obtaining pathological specimens to be used in the diagnosis of diseases involving lung hilar and mediastinal lymph node (LN) enlargement. However, application of the suction technique during EBUS-TBNA remains controversial. In addition, the effectiveness of the slow-pull capillary technique for the diagnosis of pancreatic masses was recently reported. The aim of this study was to compare the diagnostic accuracy of EBUS-TBNA using these two techniques. Methods: The accuracy, sensitivity, specificity, negative predictive value (NPV), positive predictive value (PPV), and availability of tissue cores of the suction and slow-pull capillary techniques were studied retrospectively in patients who underwent EBUS-TBNA for the diagnosis of diseases involving lung hilar and mediastinal LN enlargement. Results: A total of 97 patients with hilar and mediastinal LN enlargement underwent EBUS-TBNA; 30 patients underwent the suction technique, 56 patients underwent the slow-pull capillary technique, 5 patients underwent both techniques, and 6 patients had failed operations. The accuracy, sensitivity, specificity, NPV, PPV, and the number of tissue cores obtained with the suction and slow-pull capillary techniques were 66.67% versus 85.71% ( p = 0.039), 43.75% versus 85.42% ( p < 0.001), 92.86% versus 87.5% ( p > 0.05), 59.09% versus 50% ( p > 0.05), 87.5% versus 97.62% ( p > 0.05), and 19 versus 50 ( p = 0.004), respectively. In both univariate and multivariate analyses, the acquisition of tissue core was significantly associated with the diagnostic accuracy of EBUS-TBNA. Moreover, the slow-pull capillary technique was significantly associated with the acquisition of tissue core in EBUS-TBNA. There were no significant differences between the two groups in the blood contamination of samples. Conclusions: Use of the slow-pull capillary technique in EBUS-TBNA can significantly increase the accuracy related to the diagnosis of diseases involving hilar and mediastinal LN enlargement by improving the acquisition of tissue core. The reviews of this paper are available via the supplemental material section.
Results of a survey of practices in chronic ankle instability in France
Authors: Lopes Ronny , Ghorbani Ali , Wackenheim Frederic Leiber , Cordier Guillaume , Amouyel Thomas 
Published: February 2020

Background: After a failed conservative treatment, surgical techniques used to treat chronic ankle instability are being more and more evaluated and proficiency is increasing. Two main procedures are available: - Ligament repairs associated with tissue reinforcement - Ligament reconstructions more or less in anatomic position. Anatomic techniques have proven to be superior to non-anatomic techniques. These different surgical techniques performed arthroscopically have the main advantage to manage simultaneously associated injuries that are very common in chronic ankle instability. For some, it is the last and best diagnostic test through which a decision can be made between repair and reconstruction. Despite all this knowledge, the indications remain very heterogeneous and essentially depend on surgeons’ preference. The primary objective was of this study was make an accurate assessment of practices in France. The secondary objective was to identify situations in which the choice of surgical treatement appeared to be consensual or controversial and to try to identify the parameters that influence these choices. Methods: A survey of practices was conducted among foot and ankle surgeons in France from 3 different societies (SFA, AFCP, and GRECMIP). The survey consisted of 2 parts; the first part focused on the surgeon’s characteristics and the second part presented 3 clinical cases. A therapeutic choice was validated for each situation. Results: Two hundred and twenty-eight responses were recorded. The average age of surgeons was 46 years and they had been treating ankle instability for an average of 14 years. 67% performed this procedure less than 20 times a year and only 7% more than 50 times. More than half of them adapted to each situation (56%) while 44% always use the same technique. In 9% of cases because they are only proficient in one technique and in the other cases because they believe the technique always provides good results. 63% used the technique in open surgery, 21% under arthroscopy, 13% in minimally invasive surgery and in 7% of the cases an initial arthroscopy is performed before open surgery for stabilization. Conclusion: This survey reflected the heterogeneity of surgical practices in ankle instability and provided indications for areas of research in clinical situations with the least consensus.
Constellation to Constellation: Situation, Encounter & Doubt
Authors: Tallis Benjamin 
Published: February 2020

Low was a reaction to having gone through that peculiar… that dull greenie-grey limelight of America and its repercussions; pulling myself out of it and getting to Europe and saying, For God's sake re-evaluate why you wanted to get into this in the first place? Did you really do it just to clown around in LA? Retire. What you need is to look at yourself a bit more accurately. Find some people you don't understand and a place you don't want to be and just put yourself into it. David Bowie, to Charles Shaar Murray, NME, 12 November 19771
Prospective Analysis of Health-Related Quality of Life in Older Adults With Cancer
Authors: Ximenes Coeli Regina Carneiro , Bergmann Anke , Lima Jurema Telles de Oliveira , Lima Wigna Rayssa Pereira , de Britto Murilo Carlos , de Mello Maria Júlia Gonçalves , Thuler Luiz Claudio Santos 
Published: February 2020

Objective: The aim of the present study was to evaluate health-related quality of life (HRQoL) changes at 6 to 12 months after cancer diagnosis and to assess the impact of age in older adults with cancer. Methods: A cohort study using patients ≥60 years old diagnosed with cancer. Health-related quality of life scores were calculated according to the European Organisation for Research and Treatment of Cancer questionnaire. Student’s t tests for paired samples and a binomial logistic regression were performed. Results: The study included 241 patients. At diagnosis, the affected HRQoL functions were physical and emotional functions, financial difficulties, pain, and insomnia. At follow-up, cognitive function ( P < .001) and dyspnea ( P = .004) worsened, while emotional function improved ( P = .003). Discussion: At the 6 to 12 months of follow-up, older adult cancer patients showed worsening cognitive function and dyspnea and improved emotional function. These HRQoL changes were not associated with age.
Persistent leukocytosis in polycythemia vera is associated with disease evolution but not thrombosis
Authors: Ronner Lukas , Podoltsev Nikolai , Gotlib Jason , Heaney Mark L. , Kuykendall Andrew T. , O’Connell Casey , Shammo Jamile , Fleischman Angela G. , Scherber Robyn M. , Mesa Ruben , Yacoub Abdulraheem , Perkins Cecelia , Meckstroth Shelby , Behlman Lindsey , Chiaramonte Matthew , Salehi Mahta , Ziadkhanpour Kimia , Nguyen Hellen , Siwoski Olivia , Hung Annie Kwok , Janania Martinez Michelle , Nguyen Jenny , Patel Sagar , Kollipara Revathi , Dave Ami , Randall Megan , Grant Michael , Harrison Mitchell , Fernandez Soto Paola , Tremblay Douglas , Hoffman Ronald , Moshier Erin , Mascarenhas John 
Published: February 2020

Abstract
There are unresolved questions regarding the association between persistent leukocytosis and risk of thrombosis and disease evolution in polycythemia vera (PV), as much of the published literature on the topic does not appropriately use repeated-measures data or time-dependent modeling to answer these questions. To address this knowledge gap, we analyzed a retrospective database of 520 PV patients seen at 10 academic institutions across the United States. Taking hematologic laboratory data at ∼3-month intervals (or as available) for all patients for duration of follow-up, we used group-based trajectory modeling to identify latent clusters of patients who follow distinct trajectories with regard to their leukocyte, hematocrit, and platelet counts over time. We then tested the association between trajectory membership and hazard of 2 major outcomes: thrombosis and disease evolution to myelofibrosis, myelodysplastic syndrome, or acute myeloid leukemia. Controlling for relevant covariates, we found that persistently elevated leukocyte trajectories were not associated with the hazard of a thrombotic event (P = .4163), but were significantly associated with increased hazard of disease evolution in an ascending stepwise manner (overall P = .0002). In addition, we found that neither hematocrit nor platelet count was significantly associated with the hazard of thrombosis or disease evolution.
Bleeding in patients with sickle cell disease: a population-based study
Authors: Hariharan Nisha , Brunson Ann , Mahajan Anjlee , Keegan Theresa H. M. , Wun Ted 
Published: February 2020

Abstract
Bleeding is a known complication of sickle cell disease (SCD) and includes hemorrhagic stroke, hematuria, and vitreous hemorrhage. However, the incidence of bleeding events in patients with SCD has not been well described. We present a retrospective, population-based study examining the cumulative incidence of bleeding in 6423 patients with SCD from 1991 to 2014. We also studied risk factors associated with bleeding and the effects of bleeding on mortality, using Cox proportional hazards regression models. We used California emergency department and hospitalization databases to identify patients with SCD with intracranial hemorrhage, gastrointestinal (GI) bleeding, hemophthalmos, gross hematuria, epistaxis, menorrhagia, and other bleeding events. The cumulative incidence of any first bleeding event at age 40 years was 21% (95% confidence interval [CI], 19.8%-22.3%), increasing with age to 41% by age 60 years (95% CI, 38.8%-43.1%). The majority of bleeding events were GI (41.6%), particularly from the upper GI tract. A higher bleeding risk was associated with increased frequency of hospitalization (hazard ratio [HR], 2.16; 95% CI, 1.93-2.42), venous thromboembolism 180 days before bleeding event (HR, 4.24; 95% CI, 2.86-6.28), osteonecrosis of the femoral head (HR, 1.25; 95% CI, 1.08-1.46), and ischemic stroke (HR, 1.65; 95% CI, 1.20-2.26). Bleeding was also associated with a twofold increased risk for death (HR, 2.09; 95% CI, 1.82-2.41) adjusted for other SCD-related complications. Our novel finding of a high incidence of bleeding in patients with SCD, particularly from the upper GI tract, suggests that patients with SCD may be predisposed to bleeding, with possible etiologies including increased use of nonsteroidal anti-inflammatory drugs, mucosal infarction from vascular occlusion by sickled red blood cells, and increased stress ulceration from frequent hospitalization.
Mild parenchymal lung disease and/or low diffusion capacity impacts survival and treatment response in patients diagnosed with idiopathic pulmonary arterial hypertension
Authors: Lewis Robert A. , Thompson A.A. Roger , Billings Catherine G. , Charalampopoulos Athanasios , Elliot Charlie A. , Hamilton Neil , Hill Catherine , Hurdman Judith , Rajaram Smitha , Sabroe Ian , Swift Andy J. , Kiely David G. , Condliffe Robin 
Published: February 2020

There are limited published data defining survival and treatment response in patients with mild lung disease and/or reduced gas transfer who fulfil diagnostic criteria for idiopathic pulmonary arterial hypertension (IPAH).Patients diagnosed with IPAH between 2001 and 2019 were identified in the ASPIRE (Assessing the Spectrum of Pulmonary Hypertension Identified at a Referral Centre) registry. Using prespecified criteria based on computed tomography (CT) imaging and spirometry, patients with a diagnosis of IPAH and no lung disease were termed IPAHno-LD(n=303), and those with minor/mild emphysema or fibrosis were described as IPAHmild-LD(n=190).Survival was significantly better in IPAHno-LDthan in IPAHmild-LD(1- and 5-year survival 95% and 70%versus78% and 22%, respectively; p<0.0001). In the combined group of IPAHno-LDand IPAHmild-LD, independent predictors of higher mortality were increasing age, lower diffusing capacity of the lung for carbon monoxide (DLCO), lower exercise capacity and a diagnosis of IPAHmild-LD(all p<0.05). Exercise capacity and quality of life improved (both p<0.0001) following treatment in patients with IPAHno-LD, but not IPAHmild-LD. A proportion of patients with IPAHno-LDhad aDLCO<45%; these patients had poorer survival than patients withDLCO≥45%, although they demonstrated improved exercise capacity following treatment.The presence of even mild parenchymal lung disease in patients who would be classified as IPAH according to current recommendations has a significant adverse effect on outcomes. This phenotype can be identified using lung function testing and clinical CT reports. Patients with IPAH, no lung disease and severely reducedDLCOmay represent a further distinct phenotype. These data suggest that randomised controlled trials of targeted therapies in patients with these phenotypes are required.
Lipids and ketones dominate metabolism at the expense of glucose control in pulmonary arterial hypertension: a hyperglycaemic clamp and metabolomics study
Authors: Mey Jacob T. , Hari Adithya , Axelrod Christopher L. , Fealy Ciarán E. , Erickson Melissa L. , Kirwan John P. , Dweik Raed A. , Heresi Gustavo A. 
Published: February 2020

Individuals with idiopathic pulmonary arterial hypertension (PAH) display reduced oral glucose tolerance. This may involve defects in pancreatic function or insulin sensitivity but this hypothesis has not been tested; moreover, fasting nutrient metabolism remains poorly described in PAH. Thus, we aimed to characterise fasting nutrient metabolism and investigated the metabolic response to hyperglycaemia in PAH.12 participants (six PAH, six controls) were administered a hyperglycaemic clamp, while 52 (21 PAH, 31 controls) underwent plasma metabolomic analysis. Glucose, insulin, C-peptide, free fatty acids and acylcarnitines were assessed from the clamp. Plasma metabolomics was conducted on fasting plasma samples.The clamp verified a reduced insulin response to hyperglycaemia in PAH (−53%versuscontrol), but with similar pancreatic insulin secretion. Skeletal muscle insulin sensitivity was unexpectedly greater in PAH. Hepatic insulin extraction was elevated in PAH (+11%versuscontrol). Plasma metabolomics identified 862 metabolites: 213 elevated, 145 reduced in PAH (p<0.05). In both clamp and metabolomic cohorts, lipid oxidation and ketones were elevated in PAH. Insulin sensitivity, fatty acids, acylcarnitines and ketones correlated with PAH severity, while hepatic extraction and fatty acid:ketone ratio correlated with longer six-min walk distance.Poor glucose control in PAH could not be explained by pancreatic β-cell function or skeletal muscle insulin sensitivity. Instead, elevated hepatic insulin extraction emerged as an underlying factor. In agreement, nutrient metabolism in PAH favours lipid and ketone metabolism at the expense of glucose control. Future research should investigate the therapeutic potential of reinforcing lipid and ketone metabolism on clinical outcomes in PAH.
Change in blood eosinophils following treatment with inhaled corticosteroids may predict long-term clinical response in COPD
Authors: Mathioudakis Alexander G. , Bikov Andras , Foden Philip , Lahousse Lies , Brusselle Guy , Singh Dave , Vestbo Jørgen 
Published: February 2020

There is an emerging role for blood eosinophil count (EOS) as a biomarker to guide inhaled corticosteroid (ICS) therapy in COPD. Since ICS administration could influence EOS, we hypothesised that change in EOS following treatment with ICS may predict outcomes of long-term therapy.In apost hocanalysis of ISOLDE, a 3-year, double-blind trial comparing 500 µg fluticasone propionate twice daily with placebo in 751 patients with moderate-to-severe COPD, we evaluated whether the initial changes in EOS during ICS treatment were predictive of ICS treatment response.EOS change within 1 year after the introduction of ICS was strongly predictive of treatment response. A suppressed EOS was associated with treatment effect. Characteristically, in patients with EOS suppression of ≥200 cells·μL−1, ICS use was associated with a decelerated rate of decline of forced expiratory volume in 1 s (FEV1), by 32 mL·year−1, and a 30% reduction in the exacerbation rate. In contrast, in patients experiencing an increase in EOS of ≥200 cells·μL−1, ICS use was associated with an accelerated rate of decline of FEV1, by 37 mL·year−1and an 80% increase in the exacerbation rate (p<0.0001). EOS change was not predictive of clinical response with regards to health status evaluated using the St George's Respiratory Questionnaire.These findings suggest that EOS change after ICS administration may predict clinical response to ICS therapy in patients with moderate-to-severe COPD at risk of exacerbations. ICS administration may be associated with more frequent exacerbations and an accelerated lung function decline in the 20% of patients in whom EOS increases after the administration of ICS. These hypothesis-generating observations will need validation in prospectively designed studies.The ISOLDE trial was conducted before the ICJME recommended a prospective registration of RCT protocols.
A scoping review of core outcome sets and their ‘mapping’ onto real-world data using prostate cancer as a case study
Authors: Meregaglia Michela , Ciani Oriana , Banks Helen , Salcher-Konrad Maximilian , Carney Caroline , Jayawardana Sahan , Williamson Paula , Fattore Giovanni 
Published: February 2020

Abstract
Background
A Core Outcomes Set (COS) is an agreed minimum set of outcomes that should be reported in all clinical studies related to a specific condition. Using prostate cancer as a case study, we identified, summarized, and critically appraised published COS development studies and assessed the degree of overlap between them and selected real-world data (RWD) sources.

Methods
We conducted a scoping review of the Core Outcome Measures in Effectiveness Trials (COMET) Initiative database to identify all COS studies developed for prostate cancer. Several characteristics (i.e., study type, methods for consensus, type of participants, outcomes included in COS and corresponding measurement instruments, timing, and sources) were extracted from the studies; outcomes were classified according to a predefined 38-item taxonomy. The study methodology was assessed based on the recent COS-STAndards for Development (COS-STAD) recommendations. A ‘mapping’ exercise was conducted between the COS identified and RWD routinely collected in selected European countries.

Results
Eleven COS development studies published between 1995 and 2017 were retrieved, of which 8 were classified as ‘COS for clinical trials and clinical research’, 2 as ‘COS for practice’ and 1 as ‘COS patient reported outcomes’. Recommended outcomes were mainly categorized into ‘mortality and survival’ (17%), ‘outcomes related to neoplasm’ (18%), and ‘renal and urinary outcomes’ (13%) with no relevant differences among COS study types. The studies generally fulfilled the criteria for the COS-STAD ‘scope specification’ domain but not the ‘stakeholders involved’ and ‘consensus process’ domains. About 72% overlap existed between COS and linked administrative data sources, with important gaps. Linking with patient registries improved coverage (85%), but was sometimes limited to smaller follow-up patient groups.

Conclusions
This scoping review identified few COS development studies in prostate cancer, some quite dated and with a growing level of methodological quality over time. This study revealed promising overlap between COS and RWD sources, though with important limitations; linking established, national patient registries to administrative data provide the best means to additionally capture patient-reported and some clinical outcomes over time. Thus, increasing the combination of different data sources and the interoperability of systems to follow larger patient groups in RWD is required.