191 research outputs found

    Advancing to the next level: the quantified self and the gamification of academic research through social networks

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    Measurement of performance using digital tools is now commonplace, even in institutional activities such as academic research. The phenomenon of the “quantified self” is particularly evident in academic social networks. Björn Hammarfelt, Sarah de Rijcke, Alex Rushforth, Iris Wallenburg and Roland Bal argue that ResearchGate and similar services represent a “gamification” of research, drawing on features usually associated with online games, like rewards, rankings and levels. This carries obvious dangers, potentially promoting an understanding of the professional self as a product in competition with others. But quantification of the self in this way can also be seen as a way of taking control of one’s own (self)-evaluation. A similar pattern may be observed in healthcare and the rise of platforms carrying patient “experience” ratings and direct feedback on clinical performance

    Time-of-day effects in arousal: disrupted diurnal cortisol profiles in children with ADHD

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    Background: Fluctuations in attention-deficit hyperactivity disorder (ADHD) symptoms related to regulatory deficits in arousal states are themselves characterized by circadian rhythms. Although cortisol is an important circadian arousal-related marker, studies focusing on across-the-day cortisol variations in ADHD are scarce. There is no study with multiple measurements to take into account interday and intraday variability. Methods: Salivary cortisol was sampled five times a day (awakening, 30 min after awakening, noon, 4 p.m., 8 p.m.) across five consecutive days in 33 children with ADHD (22 with and 11 without oppositional defiant disorder; ODD) and 33 class- and sex-matched controls (aged 612). The cortisol awakening response (increase from awakening to 30 min after awakening) and the diurnal cortisol profile (across-the-day variations) were compared for ADHD with ODD (ADHD + ODD) and without ODD (ADHD) subgroups and the control group. Results: The cortisol awakening response was not significantly different between groups. However, longitudinal analyses to evaluate cortisol profiles across the day revealed a significant Group x Time effect (p < .001). More specifically, compared to each other, the ADHD subgroup showed a flatter slope with relative morning hypo-arousal and evening hyperarousal, whereas the ADHD + ODD subgroup showed a steeper slope with relative morning hyperarousal and evening hypo-arousal (p < .001). Conclusions: Findings support time-related arousal disruptions in children with ADHD associated with the presence or absence of ODD comorbidity. We recommend research on cortisol in larger samples for a better understanding of arousal mechanisms involved in ADHD not only with and without ODD but also with other comorbidities which may have implications for timing of arousal-based treatments

    The impact of avoidant/ disengagement coping and social support on the mental health of adolescent victims of sexual violence in Eastern Congo

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    Introduction Eastern Congo has been affected by armed conflict for decades while the rampant use of sexual violence has left many women and girls dealing with a wide range of consequences of sexual violence. For adolescent victims the psychosocial impact of sexual violence is devastating. However, the role of avoidant/disengagement coping and family support on the mental health impact of sexual violence remains unclear. Methods The study design was a cross-sectional, population-based survey in which 1,305 school-going adolescent girls aged 11 to 23 participated. Mental health symptoms (IES-R and HSCL-37A), family support (MSPSS), avoidant/disengagement (Kidcope), war-related traumatic events (ACEES), experiences of sexual violence, daily stressors, and stigmatization (ACEDSS) were administered through self-report measures. Hierarchical multiple regression analysis was carried out with mental health outcomes as dependent variables for different types of sexual violence. Finally, several ANCOVA models were defined to explore possible interaction effects of avoidant/disengagement coping and family support with stigmatization, daily stressors and war-related traumatic exposure. Results For girls who did not report sexual violence,avoidant/disengagement copinghas a direct negative effect on all psychological symptoms. For victims of sexual violence, when high levels of stigma were reported, avoidant/disengagement coping possibly served as a protective factor, as shown by the interaction effect between avoidance/disengagement coping and stigmatization on mental health outcomes. In victims of sexual violence however, high levels of daily stressors combined with avoidant/disengagement strategies showed a strong increase in posttraumatic stress symptoms. Interestingly, the mental health impact of sexual violence was not mitigated by support by family members. For girls who reported a nonconsensual sexual experience without labelling it as rape and at the same time testified to have a lot of family support, there was a positive association between stressors (daily stressors, stigma, and war-related trauma) and posttraumatic stress symptoms. Conclusions These results of this study underwrite to the importance of looking beyond the straightforward negative impact of avoidant/disengagement coping strategies on mental health in adolescent victims of sexual violence. While avoidant/disengagement coping can have a negative impact on psychosocial well-being on adolescent victims of sexual violence, in case of high levels of stigmatization it can as well protect them from posttraumatic stress or anxiety. Furthermore these findings speak to the importance of exploring the diversified relationship between risk and protective factors, such as avoidant/disengagement coping strategies and family support, that shape the mental health impact of sexual violence in adolescent victims

    De weg naar duurzame kwaliteit in de langdurige zorg?

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    __Abstract__ Als we iets over het resultaat van Zorg voor Beter zouden kunnen zeggen dan is het wel het uitdijende karakter. Qua opzet, doel en grootschaligheid is Zorg voor Beter een uniek programma en heeft het de kwaliteit van de langdurige zorg onmiskenbaar op de agenda heeft gezet. Een jaar na de start van Zorg voor Beter werd in opdracht van ZonMw een evaluatietraject in gang gezet door het instituut voor Beleid en Management Gezondheidszorg (iBMG). Het evaluatieonderzoek is gericht op onderzoeksvragen zoals: Wat zijn de resultaten van de projecten? Hoe kunnen we het succes (of falen) van de verschillende trajecten verklaren? Wat is de invloed van contextuele factoren en financiering? Hoe worden thema’s als autonomie, keuzevrijheid van cliënten en betrokkenheid van het management vormgegeven in het programma (Strating e.a. 2008)? Wij maakten gebruik van zowel kwantitatieve (vragenlijsten voor cliënten, medewerkers en teamleiders) als kwalitatieve onderzoeksmethoden zoals observaties van conferenties en case studies in de deelnemende organisaties. In dit hoofdstuk reflecteren wij op thema’s zoals de resultaten (voor zowel cliënten als deelnemende organisaties), de koppeling met ontwikkelingen in de sector, de functie van het meten en het vasthouden en verspreiden van verbeteringen en nieuwe werkmethoden. In de laatste paragrafen beschrijven wij hoe in het programma en in de deelnemende teams aandacht is besteed aan de thema’s cliëntenparticipatie en managementbetrokkenheid

    The speculative turn in IVF: egg freezing and the financialization of fertility

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    Although egg freezing has received much scholarly attention, the pivotal role of financialisation in the fertility (preservation) sector remains understudied. This article discusses how processes of financialisation have instigated a step-change in the organisation of contemporary US IVF and why egg freezing is at the heart of a wider consolidating trend in the sector. The financialisation of fertility, in this context, references the financial investments in a future in which ever more women freeze their eggs, the role of capital markets in establishing new clinical and commercial infrastructures through which egg freezing becomes accessible and the role of financial products in shaping both the stories and the streamlining of fertility treatments. Together, these developments signal a shift from reproduction to fertility in IVF, in which treatment is not aimed at having a child at present, but rather at the proactive management of a more speculative fertility throughout the life course.Alan Turing Institut

    Germline biallelic mutation affecting the transcription factor Helios causes pleiotropic defects of immunity

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    Helios, a member of the Ikaros family of transcription factors, is predominantly expressed in developing thymocytes, activated T cells, and regulatory T cells (T-regs). Studies in mice have emphasized its role in maintenance of T-reg immunosuppressive functions by stabilizing Foxp3 expression and silencing the Il2 locus. However, its contribution to human immune homeostasis and the precise mechanisms by which Helios regulates other T cell subsets remain unresolved. Here, we investigated a patient with recurrent respiratory infections and hypogammaglobulinemia and identified a germline homozygous missense mutation in IKZF2 encoding Helios (p.Ile325Val). We found that Helios(I325V) retains DNA binding and dimerization properties but loses interaction with several partners, including epigenetic remodelers. Whereas patient T-regs showed increased IL-2 production, patient conventional T cells had decreased accessibility of the IL2 locus and consequently reduced IL-2 production. Reduced chromatin accessibility was not exclusive to the IL2 locus but involved a variety of genes associated with T cell activation. Single-cell RNA sequencing of peripheral blood mononuclear cells revealed gene expression signatures indicative of a shift toward a proinflammatory, effector-like status in patient CD8(+) T cells. Moreover, patient CD4(+) T cells exhibited a pronounced defect in proliferation with delayed expression of surface checkpoint inhibitors, suggesting an impaired onset of the T cell activation program. Collectively, we identified a previously uncharacterized, germline-encoded inborn error of immunity and uncovered a cell-specific defect in Helios-dependent epigenetic regulation. Binding of Helios with specific partners mediates this regulation, which is ultimately necessary for the transcriptional programs that enable T cell homeostasis in health and disease.Peer reviewe

    Investigation of associations between retinal microvascular parameters and albuminuria in UK Biobank: a cross-sectional case-control study.

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    BACKGROUND: Associations between microvascular variation and chronic kidney disease (CKD) have been reported previously. Non-invasive retinal fundus imaging enables evaluation of the microvascular network and may offer insight to systemic risk associated with CKD. METHODS: Retinal microvascular parameters (fractal dimension [FD] - a measure of the complexity of the vascular network, tortuosity, and retinal arteriolar and venular calibre) were quantified from macula-centred fundus images using the Vessel Assessment and Measurement Platform for Images of the REtina (VAMPIRE) version 3.1 (VAMPIRE group, Universities of Dundee and Edinburgh, Scotland) and assessed for associations with renal damage in a case-control study nested within the multi-centre UK Biobank cohort study. Participants were designated cases or controls based on urinary albumin to creatinine ratio (ACR) thresholds. Participants with ACR ≥ 3 mg/mmol (ACR stages A2-A3) were characterised as cases, and those with an ACR < 3 mg/mmol (ACR stage A1) were categorised as controls. Participants were matched on age, sex and ethnic background. RESULTS: Lower FD (less extensive microvascular branching) was associated with a small increase in odds of albuminuria independent of blood pressure, diabetes and other potential confounding variables (odds ratio [OR] 1.18, 95% confidence interval [CI] 1.03-1.34 for arterioles and OR 1.24, CI 1.05-1.47 for venules). Measures of tortuosity or retinal arteriolar and venular calibre were not significantly associated with ACR. CONCLUSIONS: This study supports previously reported associations between retinal microvascular FD and other metabolic disturbances affecting the systemic vasculature. The association between retinal microvascular FD and albuminuria, independent of diabetes and blood pressure, may represent a useful indicator of systemic vascular damage associated with albuminuria

    Identification of germline monoallelic mutations in IKZF2 in patients with immune dysregulation

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    Helios, encoded by IKZF2, is a member of the Ikaros family of transcription factors with pivotal roles in T-follicular helper, NK- and T-regulatory cell physiology. Somatic IKZF2 mutations are frequently found in lymphoid malignancies. Although germline mutations in IKZF1 and IKZF3 encoding Ikaros and Aiolos have recently been identified in patients with phenotypically similar immunodeficiency syndromes, the effect of germline mutations in IKZF2 on human hematopoiesis and immunity remains enigmatic. We identified germline IKZF2 mutations (one nonsense (p.R291X)- and 4 distinct missense variants) in six patients with systemic lupus erythematosus, immune thrombocytopenia or EBV-associated hemophagocytic lymphohistiocytosis. Patients exhibited hypogammaglobulinemia, decreased number of T-follicular helper and NK cells. Single-cell RNA sequencing of PBMCs from the patient carrying the R291X variant revealed upregulation of proinflammatory genes associated with T-cell receptor activation and T-cell exhaustion. Functional assays revealed the inability of HeliosR291X to homodimerize and bind target DNA as dimers. Moreover, proteomic analysis by proximity-dependent Biotin Identification revealed aberrant interaction of 3/5 Helios mutants with core components of the NuRD complex conveying HELIOS-mediated epigenetic and transcriptional dysregulation.Peer reviewe
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