99 research outputs found
Promoting patient engagement with self-management support information: a qualitative meta-synthesis of processes influencing uptake
<p>Abstract</p> <p>Background</p> <p>Patient information has been viewed as a key component of self-management. However, little attention has been given to methods of dissemination or implementation of effective information strategies. Previous problems identified with the use and implementation of patient information point to the need to explore the way in which patients engage with and use information to support self-management for chronic conditions.</p> <p>Methods</p> <p>Four published qualitative studies from a programme of research about self-management were analysed as a group; these included studies of the management of inflammatory bowel disease (IBD); self-help in anxiety and depression (SHADE); menorrhagia, treatment, information, and preference (MENTIP) study; and self-help for irritable bowel syndrome (IBS). For the analysis, we used an adapted meta-ethnographic approach to the synthesis of qualitative data in order to develop an evidence base.</p> <p>Results</p> <p>The ontological status and experience of the condition in everyday life was the most dominant theme to emerge from this synthesis. This, coupled with access to and experience of traditional health services responses, shaped the engagement with and use of information to support self-management. Five key elements were found which were likely to influence this: the perception and awareness of alternative self-management possibilities; the prior extent and nature of engagement with information; the extent of and ability to self-manage; opportunities for use of the information and the stage of the illness career; and congruence and synergy with the professional role.</p> <p>Conclusion</p> <p>People with chronic conditions need support from providers in both supply and engagement with information, in a way which gives legitimacy to the person's own self-management strategies and possible alternatives. Thus, a link could usefully be made between information offered, as well as patients' past experiences of self-management and engagement with services for their condition. The timeliness of the information should be considered, both in terms of the illness career and the type of condition (<it>i.e</it>., before depression gets too bad or time to reflect on existing knowledge about a condition and how it is to be managed) and in terms of the pre-existing relationship with services (<it>i.e</it>., options explored and tried).</p> <p>More considered use of information (how it is provided, by whom, and at what point it should be introduced) is key to facilitating patients' engagement with and therefore use of information to support self-management.</p
People are essential to linking biodiversity data
People are one of the best known and most stable entities in the biodiversity knowledge graph. The wealth of public information associated with people and the ability to identify them uniquely open up the possibility to make more use of these data in biodiversity science. Person data are almost always associated with entities such as specimens, molecular sequences, taxonomic names, observations, images, traits and publications. For example, the digitization and the aggregation of specimen data from museums and herbaria allow us to view a scientist’s specimen collecting in conjunction with the whole corpus of their works. However, the metadata of these entities are also useful in validating data, integrating data across collections and institutional databases and can be the basis of future research into biodiversity and science. In addition, the ability to reliably credit collectors for their work has the potential to change the incentive structure to promote improved curation and maintenance of natural history collections
The Lost Library of Anne Conway
The philosopher Anne Conway (1631-1679) owned a large library, and her reading and book ownership shaped her intellectual life in distinctive ways. Until now, however, almost nothing has been known about the details of her reading or her book collection. Current scholarship assumes that her library, like that of her husband, the third Viscount Conway (c. 1623–1683), was lost or dispersed after her death. This article presents previously unrecognised evidence of Conway’s book ownership, and identifies, for the first time, the only books currently known to survive from her personal library. It traces their path to their current location in the Old Library of Jesus College, Cambridge, through the library of the soldier, book collector, and Cambridge Fellow Francis Sterling (c. 1652-1692). The article demonstrates that the newly identified books reveal previously unknown patterns of intellectual exchange amongst Conway’s family, and argues that they have significant implications for our understanding of her early intellectual development
Molecular Characterization of NRXN1 Deletions from 19,263 Clinical Microarray Cases Identifies Exons Important for Neurodevelopmental Disease Expression
PURPOSE: The purpose of the current study was to assess the penetrance of NRXN1 deletions.
METHODS: We compared the prevalence and genomic extent of NRXN1 deletions identified among 19,263 clinically referred cases to that of 15,264 controls. The burden of additional clinically relevant copy-number variations (CNVs) was used as a proxy to estimate the relative penetrance of NRXN1 deletions.
RESULTS: We identified 41 (0.21%) previously unreported exonic NRXN1 deletions ascertained for developmental delay/intellectual disability that were significantly greater than in controls (odds ratio (OR) = 8.14; 95% confidence interval (CI): 2.91-22.72; P \u3c 0.0001). Ten (22.7%) of these had a second clinically relevant CNV. Subjects with a deletion near the 3\u27 end of NRXN1 were significantly more likely to have a second rare CNV than subjects with a 5\u27 NRXN1 deletion (OR = 7.47; 95% CI: 2.36-23.61; P = 0.0006). The prevalence of intronic NRXN1 deletions was not statistically different between cases and controls (P = 0.618). The majority (63.2%) of intronic NRXN1 deletion cases had a second rare CNV at a prevalence twice as high as that for exonic NRXN1 deletion cases (P = 0.0035).
CONCLUSIONS: The results support the importance of exons near the 5\u27 end of NRXN1 in the expression of neurodevelopmental disorders. Intronic NRXN1 deletions do not appear to substantially increase the risk for clinical phenotypes.Genet Med 19 1, 53-61
Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial
Background
Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy
A 2 × 2 factorial, randomised, open-label trial to determine the clinical and cost-effectiveness of hypertonic saline (HTS 6%) and carbocisteine for airway clearance versus usual care over 52 weeks in adults with bronchiectasis:a protocol for the CLEAR clinical trial
Background: Current guidelines for the management of bronchiectasis (BE) highlight the lack of evidence to recommend mucoactive agents, such as hypertonic saline (HTS) and carbocisteine, to aid sputum removal as part of standard care. We hypothesise that mucoactive agents (HTS or carbocisteine, or a combination) are effective in reducing exacerbations over a 52-week period, compared to usual care. Methods: This is a 52-week, 2 × 2 factorial, randomized, open-label trial to determine the clinical effectiveness and cost effectiveness of HTS 6% and carbocisteine for airway clearance versus usual care-the Clinical and cost-effectiveness of hypertonic saline (HTS 6%) and carbocisteine for airway clearance versus usual care (CLEAR) trial. Patients will be randomised to (1) standard care and twice-daily nebulised HTS (6%), (2) standard care and carbocisteine (750 mg three times per day until visit 3, reducing to 750 mg twice per day), (3) standard care and combination of twice-daily nebulised HTS and carbocisteine, or (4) standard care. The primary outcome is the mean number of exacerbations over 52 weeks. Key inclusion criteria are as follows: Adults with a diagnosis of BE on computed tomography, BE as the primary respiratory diagnosis, and two or more pulmonary exacerbations in the last year requiring antibiotics and production of daily sputum. Discussion: This trial's pragmatic research design avoids the significant costs associated with double-blind trials whilst optimising rigour in other areas of trial delivery. The CLEAR trial will provide evidence as to whether HTS, carbocisteine or both are effective and cost effective for patients with BE. Trial registration: EudraCT number: 2017-000664-14 (first entered in the database on 20 October 2017). ISRCTN.com, ISRCTN89040295. Registered on 6 July/2018. Funder: National Institute for Health Research, Health Technology Assessment Programme (15/100/01). Sponsor: Belfast Health and Social Care Trust. Ethics Reference Number: 17/NE/0339. Protocol version: V3.0 Final_14052018
Time to computerized tomography scan, age, and mortality in acute stroke
Background: Time to computerized tomography (CT) is important to institute appropriate and timely hyper-acute management in stroke. We aimed to evaluate mortality outcomes in relation to age and time to CT scan. Methods: We used routinely collected data in eight National Health Service Trusts in East of England between September 2008 and April 2011. Stroke cases were prospectively identified and confirmed. Odds ratios for unadjusted and adjusted models for age categories(24 hours) and the in-hospital and early(<7 days) mortality outcomes were calculated. Results: Of 7,693 patients (mean age 76.1 years, 50% male) included, 1,151(16%) died as inpatient and 336(4%) died within seven days. Older patients and those admitted from care home had a significantly longer time from admission until CT (p<0.001). Patients who had earlier CT scans were admitted to stroke units more frequently (p<0.001) but had higher in-patient(p<0.001) and seven-day mortality(p<0.001). Whilst older age was associated with increased odds of mortality outcomes, longer time to CT was associated with significantly reduced within 7 day mortality(corresponding ORs for above time periods were 1.00, 0.61(0.39-0.95), 0.39(0.24-0.64) and 0.16(0.08-0.33) and in-hospital mortality(ORs 1.00, 0.86(0.64-1.15), 0.57(0.42-0.78) and 0.71(0.52-0.98)). Conclusions: Older age was associated with a significantly longer time to CT. However, using CT scan time as a benchmarking tool in stroke may have inherent limitations and it does not appear to be a suitable quality marker
Mother, Monster, Mrs, I:A critical evaluation of gendered naming strategies in English sentencing remarks of women who kill
In this article, we take a novel approach to analysing English sentencing remarks in cases of women who kill. We apply computational, quantitative, and qualitative methods from corpus linguistics to analyse recurrent patterns in a collection of English Crown Court sentencing remarks from 2012 to 2015, where a female defendant was convicted of a homicide offence. We detail the ways in which women who kill are referred to by judges in the sentencing remarks, providing frequency information on pronominal, nominative, and categorising naming strategies. In discussion of the various patterns of preference both across and within these categories (e.g. pronoun vs. nomination, title + surname vs. forename + surname), we remark upon the identities constructed through the references provided. In so doing, we: (1) quantify the extent to which members of the judiciary invoke patriarchal values and gender stereotypes within their sentencing remarks to construct female defendants, and (2) identify particular identities and narratives that emerge within sentencing remarks for women who kill. We find that judges refer to women who kill in a number of ways that systematically create dichotomous narratives of degraded victims or dehumanised monsters. We also identify marked absences in naming strategies, notably: physical identification normally associated with narrativization of women’s experiences; and the first person pronoun, reflecting omissions of women’s own voices and narratives of their lived experiences in the courtroom
Phylogenetic ctDNA analysis depicts early-stage lung cancer evolution.
The early detection of relapse following primary surgery for non-small-cell lung cancer and the characterization of emerging subclones, which seed metastatic sites, might offer new therapeutic approaches for limiting tumour recurrence. The ability to track the evolutionary dynamics of early-stage lung cancer non-invasively in circulating tumour DNA (ctDNA) has not yet been demonstrated. Here we use a tumour-specific phylogenetic approach to profile the ctDNA of the first 100 TRACERx (Tracking Non-Small-Cell Lung Cancer Evolution Through Therapy (Rx)) study participants, including one patient who was also recruited to the PEACE (Posthumous Evaluation of Advanced Cancer Environment) post-mortem study. We identify independent predictors of ctDNA release and analyse the tumour-volume detection limit. Through blinded profiling of postoperative plasma, we observe evidence of adjuvant chemotherapy resistance and identify patients who are very likely to experience recurrence of their lung cancer. Finally, we show that phylogenetic ctDNA profiling tracks the subclonal nature of lung cancer relapse and metastasis, providing a new approach for ctDNA-driven therapeutic studies
Fc Effector Function Contributes to the Activity of Human Anti-CTLA-4 Antibodies.
With the use of a mouse model expressing human Fc-gamma receptors (FcγRs), we demonstrated that antibodies with isotypes equivalent to ipilimumab and tremelimumab mediate intra-tumoral regulatory T (Treg) cell depletion in vivo, increasing the CD8+ to Treg cell ratio and promoting tumor rejection. Antibodies with improved FcγR binding profiles drove superior anti-tumor responses and survival. In patients with advanced melanoma, response to ipilimumab was associated with the CD16a-V158F high affinity polymorphism. Such activity only appeared relevant in the context of inflamed tumors, explaining the modest response rates observed in the clinical setting. Our data suggest that the activity of anti-CTLA-4 in inflamed tumors may be improved through enhancement of FcγR binding, whereas poorly infiltrated tumors will likely require combination approaches
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