From information seekers to innovators : qualitative analysis describing experiences of the second generation of e-patients

Background: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. Objective: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. Methods: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset. Results: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. Conclusions: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstancesVinnova, the Swedish Governmental Agency for Innovation Systems (grant number 2017-01221)Publishe

Cancer Prevention Literacy among Different Population Subgroups: Challenges and Enabling Factors for Adopting and Complying with Cancer Prevention Recommendations

It is estimated that 40% of the cancer cases in Europe could be prevented if people had better information and tools to make healthier choices and thereby reduce some of the most important cancer risk factors. The aim of this study is to gain knowledge and understanding about cancer prevention literacy among people with intellectual disabilities, immigrants, young people and young cancer survivors. In this qualitative study, we conducted six online focus-group interviews, including forty participants, to explore the cancer prevention literacy of four population subgroups and determine how cancer prevention recommendations according to the European Code Against Cancer (ECAC) were perceived. The analysis resulted in the following main categories: current health beliefs and their impacts on how the ECAC recommendations were perceived, communication strategies and sources benefiting or hindering cancer prevention information from reaching out, and how vulnerabilities in these subgroups impact cancer prevention literacy. To improve cancer prevention literacy in Europe, more attention is needed this topic to overcome barriers among different population subgroups. Recommendations include improved and adapted cancer prevention information, support to individuals, as well as societal support, such as easy-access screening and vaccination programmes and regulations related to tobacco, alcohol, and diet

The effectiveness of nurse-led interventions for cancer symptom management 2000-2018: a systematic review and meta-analysis

Background Evidence for effectiveness of nurse-led interventions for cancer-related symptoms is of variable quality. This study aimed to identify, appraise and evaluate the nature and effectiveness of nurse-led interventions on symptoms for people with cancer. Methods A systematic review and meta-analysis. Ten major databases were searched (2000 to 2018, no language restrictions). Two reviewers applied a priori selection criteria; data extraction included design, population, cancer type, and cancer-related symptoms. Interventions and providers were profiled using TIDieR reporting guidelines, and content analysis of components. Methodological quality was assessed using Cochrane risk of bias. A meta-analysis was performed using mean and standardised mean differences with 95% confidence intervals. Overall certainty was assessed using GRADE. Results From 29193 records, 149 studies (n = 107286 participants) from 22 countries were eligible. Interventions included multiple components; education and psychological approaches dominated. Pooled meta-analyses found evidence of benefit for nurse-led interventions on measures of constipation (MD −4.54, 95% CI −8.08 to −0.99; 645 participants; 6 trials; I2 = 0%; P = 0.01); nausea and vomiting (MD −1.97, 95% CI −3.61 to −0.33; 957 participants; 8 trials; I 2 = 12%; P = 0.02) and fatigue (MD −4.63, 95% CI −7.97 to −1.30; 1208 participants; 11 trials; I2 = 34%; P = 0.007). Psychological morbidity (anxiety, depression, mood) also improved. However, few trials used consistent outcome measures, interventions were poorly defined, and certainty of evidence was low or very low. Conclusion Nurse-led interventions improve specific cancer-related symptoms, including psychological morbidity. Enhanced reporting and collaboration to develop a minimum core dataset would strengthen the quality of evidence

Transformationspfade der Zivilgesellschaft?

Für eine erfolgreiche Nachhaltigkeitspolitik sind neue Allianzen nötig. Welche Rolle könnendabei Umwelt-, Sozial- und Wohlfahrtsverbände sowie Gewerkschaften spielen? Welche Rahmenbedingungen sind für eine solche kooperative Mitgestaltung hilfreich

National scale evaluation of the InVEST nutrient retention model in the United Kingdom

A wide variety of tools aim to support decision making by modelling, mapping and quantifying ecosystem services. If decisions are to be properly informed, the accuracy and potential limitations of these tools must be well understood. However, dedicated studies evaluating ecosystem service models against empirical data are rare, especially over large areas. In this paper, we report on the national-scale assessment of a new ecosystem service model for nutrient delivery and retention, the InVEST Nutrient Delivery Ratio model. For 36 river catchments across the UK, we modelled total catchment export of phosphorus (P) and/or nitrogen (N) and compared model outputs to measurements derived from empirical water chemistry data. The model performed well in terms of relative magnitude of nutrient export among catchments (best Spearman’s rank correlation for N and P, respectively: 0.81 and 0.88). However, there was wide variation among catchments in the accuracy of the model, and absolute values of nutrient exports frequently showed high percentage differences between modelled and empirically-derived exports (best median absolute percentage difference for N and P, respectively: ± 64%, ± 44%). The model also showed a high degree of sensitivity to nutrient loads and hydrologic routing input parameters and these sensitivities varied among catchments. These results suggest that the InVEST model can provide valuable information on nutrient fluxes to decision makers, especially in terms of relative differences among catchments. However, caution is needed if using the absolute modelled values for decision-making. Our study also suggests particular attention should be paid to researching input nutrient loadings and retentions, and the selection of appropriate input data resolutions and threshold flow accumulation values. Our results also highlight how availability of empirical data can improve model calibration and performance assessment and reinforce the need to include such data in ecosystem service modelling studies

Pol II phosphorylation regulates a switch between transcriptional and splicing condensates

The synthesis of pre-mRNA by RNA polymerase II (Pol II) involves the formation of a transcription initiation complex, and a transition to an elongation complex. The large subunit of Pol II contains an intrinsically disordered C-terminal domain that is phosphorylated by cyclin-dependent kinases during the transition from initiation to elongation, thus influencing the interaction of the C-terminal domain with different components of the initiation or the RNA-splicing apparatus. Recent observations suggest that this model provides only a partial picture of the effects of phosphorylation of the C-terminal domain. Both the transcription-initiation machinery and the splicing machinery can form phase-separated condensates that contain large numbers of component molecules: hundreds of molecules of Pol II and mediator are concentrated in condensates at super-enhancers, and large numbers of splicing factors are concentrated in nuclear speckles, some of which occur at highly active transcription sites. Here we investigate whether the phosphorylation of the Pol II C-terminal domain regulates the incorporation of Pol II into phase-separated condensates that are associated with transcription initiation and splicing. We find that the hypophosphorylated C-terminal domain of Pol II is incorporated into mediator condensates and that phosphorylation by regulatory cyclin-dependent kinases reduces this incorporation. We also find that the hyperphosphorylated C-terminal domain is preferentially incorporated into condensates that are formed by splicing factors. These results suggest that phosphorylation of the Pol II C-terminal domain drives an exchange from condensates that are involved in transcription initiation to those that are involved in RNA processing, and implicates phosphorylation as a mechanism that regulates condensate preference

Novel immunomodulators from hard ticks selectively reprogramme human dendritic cell responses

Hard ticks subvert the immune responses of their vertebrate hosts in order to feed for much longer periods than other blood-feeding ectoparasites; this may be one reason why they transmit perhaps the greatest diversity of pathogens of any arthropod vector. Tick-induced immunomodulation is mediated by salivary components, some of which neutralise elements of innate immunity or inhibit the development of adaptive immunity. As dendritic cells (DC) trigger and help to regulate adaptive immunity, they are an ideal target for immunomodulation. However, previously described immunoactive components of tick saliva are either highly promiscuous in their cellular and molecular targets or have limited effects on DC. Here we address the question of whether the largest and globally most important group of ticks (the ixodid metastriates) produce salivary molecules that specifically modulate DC activity. We used chromatography to isolate a salivary gland protein (Japanin) from Rhipicephalus appendiculatus ticks. Japanin was cloned, and recombinant protein was produced in a baculoviral expression system. We found that Japanin specifically reprogrammes DC responses to a wide variety of stimuli in vitro, radically altering their expression of co-stimulatory and co-inhibitory transmembrane molecules (measured by flow cytometry) and their secretion of pro-inflammatory, anti-inflammatory and T cell polarising cytokines (assessed by Luminex multiplex assays); it also inhibits the differentiation of DC from monocytes. Sequence alignments and enzymatic deglycosylation revealed Japanin to be a 17.7 kDa, N-glycosylated lipocalin. Using molecular cloning and database searches, we have identified a group of homologous proteins in R. appendiculatus and related species, three of which we have expressed and shown to possess DC-modulatory activity. All data were obtained using DC generated from at least four human blood donors, with rigorous statistical analysis. Our results suggest a previously unknown mechanism for parasite-induced subversion of adaptive immunity, one which may also facilitate pathogen transmission

Dissecting the Shared Genetic Architecture of Suicide Attempt, Psychiatric Disorders, and Known Risk Factors

Background Suicide is a leading cause of death worldwide, and nonfatal suicide attempts, which occur far more frequently, are a major source of disability and social and economic burden. Both have substantial genetic etiology, which is partially shared and partially distinct from that of related psychiatric disorders. Methods We conducted a genome-wide association study (GWAS) of 29,782 suicide attempt (SA) cases and 519,961 controls in the International Suicide Genetics Consortium (ISGC). The GWAS of SA was conditioned on psychiatric disorders using GWAS summary statistics via multitrait-based conditional and joint analysis, to remove genetic effects on SA mediated by psychiatric disorders. We investigated the shared and divergent genetic architectures of SA, psychiatric disorders, and other known risk factors. Results Two loci reached genome-wide significance for SA: the major histocompatibility complex and an intergenic locus on chromosome 7, the latter of which remained associated with SA after conditioning on psychiatric disorders and replicated in an independent cohort from the Million Veteran Program. This locus has been implicated in risk-taking behavior, smoking, and insomnia. SA showed strong genetic correlation with psychiatric disorders, particularly major depression, and also with smoking, pain, risk-taking behavior, sleep disturbances, lower educational attainment, reproductive traits, lower socioeconomic status, and poorer general health. After conditioning on psychiatric disorders, the genetic correlations between SA and psychiatric disorders decreased, whereas those with nonpsychiatric traits remained largely unchanged. Conclusions Our results identify a risk locus that contributes more strongly to SA than other phenotypes and suggest a shared underlying biology between SA and known risk factors that is not mediated by psychiatric disorders.Peer reviewe

Why rankings of biomedical image analysis competitions should be interpreted with care

International challenges have become the standard for validation of biomedical image analysis methods. Given their scientific impact, it is surprising that a critical analysis of common practices related to the organization of challenges has not yet been performed. In this paper, we present a comprehensive analysis of biomedical image analysis challenges conducted up to now. We demonstrate the importance of challenges and show that the lack of quality control has critical consequences. First, reproducibility and interpretation of the results is often hampered as only a fraction of relevant information is typically provided. Second, the rank of an algorithm is generally not robust to a number of variables such as the test data used for validation, the ranking scheme applied and the observers that make the reference annotations. To overcome these problems, we recommend best practice guidelines and define open research questions to be addressed in the future