Systematic scoping review protocol of Stroke Patient and Stakeholder Engagement (SPSE).

This protocol describes a systematic scoping review of Stroke Patient and Stakeholder Engagement (SPSE), concepts, definitions, models, implementation strategies, indicators, or frameworks. The active engagement of patients and other stakeholders is increasingly acknowledged as essential to patient-centered research to answer questions of importance to patients and their caregivers. Stroke is a debilitating, long-lasting burden for individuals, their families, and healthcare professionals. They require rehabilitation services, health care system assistance, and social support. Their difficulties are unique and require the continued involvement of all parties involved. Understanding SPSE in research is fundamental to healthcare planning and extends the role of patients and stakeholders beyond that of the study subject. We will conduct a systematic literature search to identify the types of existing evidence related to SPSE, implementation strategies, indicators, or frameworks related to Patient and Stakeholder Engagement (PSE); clarify key concepts, definitions, and components of SPSE; compile experiences and prerequisites; and identify stroke research internationally. Two independent reviewers will extract data from selected studies onto a customized extraction form that has already been piloted. We integrate existing knowledge to address gaps in the literature on SPSE research by presenting the model, implementation strategies, indicators, and frameworks for stroke patients. We hope that these findings will offer future researchers a clear picture and conceptual model of SPSE.

Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy.

OBJECTIVES: To evaluate the extent and quality of patient involvement reporting in examples of current practice in health research. DESIGN: Mixed-methods study. We used a targeted search strategy across three cohorts to identify health research publications that reported patient involvement: original research articles published in 2019 in the British Medical Journal (BMJ), articles listed in the Patient-Centered Outcomes Research Institute (PCORI) database (2019), and articles citing the GRIPP2 (Guidance for Reporting Involvement of Patients and Public) reporting checklist for patient involvement or a critical appraisal guideline for user involvement. Publications were coded according to three coding schemes: 'phase of involvement', the GRIPP2-Short Form (GRIPP2-SF) reporting checklist and the critical appraisal guideline. OUTCOME MEASURES: The phase of the study in which patients were actively involved. For the BMJ sample, the proportion of publications that reported patient involvement. The quality of reporting based on the GRIPP2-SF reporting guideline. The quality of patient involvement based on the critical appraisal guideline. Quantitative and qualitative results are reported. RESULTS: We included 86 publications that reported patient involvement. Patients were most frequently involved in study design (90% of publications, n=77), followed by study conduct (71%, n=61) and dissemination (42%, n=36). Reporting of patient involvement was often incomplete, for example, only 40% of publications (n=34) reported the aim of patient involvement. While the methods (57%, n=49) and results (59%, n=51) of involvement were reported more frequently, reporting was often unspecific and the influence of patients' input remained vague. Therefore, a systematic assessment of the quality and impact of patient involvement according to the critical appraisal guideline was not feasible across samples. CONCLUSIONS: As patient involvement is increasingly seen as an integral part of the research process and requested by funding bodies, it is essential that researchers receive specific guidance on how to report patient involvement activities. Complete reporting builds the foundation for assessing the quality of patient involvement and its impact on research.

Finding the best fit for improving reproducibility: reflections from the QUEST Center for Responsible Research.

Increasing the reproducibility and trustworthiness of biomedical research requires engaging stakeholders from all levels in an institutional setting. The QUEST Center for Responsible Research aims to develop and implement new approaches to improve the culture and practice of research, tailored to the needs of these stakeholders. Members of the QUEST Center organised a brainstorm to reflect on the challenges and new opportunities encountered in implementing different projects through QUEST and share the lessons that working groups have learned over the first five years. The authors informally surveyed and interviewed working groups where relevant and highlight common themes that have influenced the success of many projects, including top-down and bottom-up engagement, managing expectations, the availability of expertise, ensuring sustainability, and considering incentives. The commentary authors conclude by encouraging the research community to view initiatives that promote reproducibility not as a one-size-fits-all undertaking, but rather as an opportunity to unite stakeholders and customise drivers of cultural change.

Stakeholder involvement in dementia research: A qualitative approach with healthy senior citizens and providers of dementia care in Germany.

Engaging stakeholders in health-related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups of dementia care in research priority setting and how they would want to be involved in dementia research. Group discussions were carried out with 47 participants divided into two groups: (a) healthy senior citizens and (b) providers of dementia care. Ensuing responses were analysed using descriptive content analysis. The main research interest of both groups was similar, but senior citizens and providers of dementia care varied in how they perceived the roles of researchers and stakeholders involved. Groups also differed with respect to the amount of time they would be willing to invest into research. The results contribute to our knowledge of group-specific stakeholder priorities and attitudes regarding participatory involvement in dementia research.

No association of cortical amyloid load and EEG connectivity in older people with subjective memory complaints.

Changes in functional connectivity of cortical networks have been observed in resting-state EEG studies in healthy aging as well as preclinical and clinical stages of AD. Little information, however, exists on associations between EEG connectivity and cortical amyloid load in people with subjective memory complaints. Here, we determined the association of global cortical amyloid load, as measured by florbetapir-PET, with functional connectivity based on the phase-lag index of resting state EEG data for alpha and beta frequency bands in 318 cognitively normal individuals aged 70-85 years with subjective memory complaints from the INSIGHT-preAD cohort. Within the entire group we did not find any significant associations between global amyloid load and phase-lag index in any frequency band. Assessing exclusively the subgroup of amyloid-positive participants, we found enhancement of functional connectivity with higher global amyloid load in the alpha and a reduction in the beta frequency bands. In the amyloid-negative participants, higher amyloid load was associated with lower connectivity in the low alpha band. However, these correlations failed to reach significance after controlling for multiple comparisons. The absence of a strong amyloid effect on functional connectivity may represent a selection effect, where individuals remain in the cognitively normal group only if amyloid accumulation does not impair cortical functional connectivity.

Cortical amyloid accumulation is associated with alterations of structural integrity in older people with subjective memory complaints.

We determined the effect of cortical amyloid load using 18F-florbetapir PET on cognitive performance and gray matter structural integrity derived from MRI in 318 cognitively normally performing older people with subjective memory impairment from the INSIGHT-preAD cohort using multivariate partial least squares regression. Amyloid uptake was associated with reduced gray matter structural integrity in hippocampus, entorhinal and cingulate cortex, middle temporal gyrus, prefrontal cortex, and lentiform nucleus (p < 0.01, permutation test). Higher amyloid load was associated with poorer global cognitive performance, delayed recall and attention (p < 0.05), independently of its effects on gray matter connectivity. These findings agree with the assumption of a two-stage effect of amyloid on cognition, (1) an early direct effect in the preclinical stages of Alzheimer's disease and (2) a delayed effect mediated by downstream effects of amyloid accumulation, such as gray matter connectivity decline.

Being low prepares for being neglected: Verticality affects expectancy of social participation.

Previous research suggests that the established link of vertical position and self-assignment of social power affects the processing of social exclusion. We hypothesized that verticality-induced self-assignment of social power moderates the evaluation of exclusion via a change in subjective expectancy of social participation. Following this idea, a superior position-associated with higher power-was supposed to increase the sensitivity for a transition to social exclusion. The transition was simulated in a virtual ball tossing game (cyberball): an inclusionary block was followed by partial exclusion of the participant. The participants' vertical position relative to the co-players was varied in three experimental groups (superior vs. even vs. inferior). From inclusion to partial exclusion, we observed an increase of an event-related brain potential related to the violation of subjective expectancy (P3), and participants reported a corresponding increase in threat to social needs and negative mood. For participants at inferior position exclusionary effects on both, P3 and need threat, were less pronounced as compared to participants at even or superior position. These results indicate that verticality impacts basic cognitive processes of subjective expectancy formation. An inferior position already provides a bias for the loss of social power, and the transition to social exclusion is less unexpected.

Target and Non-Target Processing during Oddball and Cyberball: A Comparative Event-Related Potential Study.

The phenomenon of social exclusion can be investigated by using a virtual ball-tossing game called Cyberball. In neuroimaging studies, structures have been identified which are activated during social exclusion. But to date the underlying mechanisms are not fully disclosed. In previous electrophysiological studies it was shown that the P3 complex is sensitive to exclusion manipulations in the Cyberball paradigm and that there is a correlation between P3 amplitude and self-reported social pain. Since this posterior event-related potential (ERP) was widely investigated using the oddball paradigm, we directly compared the ERP effects elicited by the target (Cyberball: "ball possession") and non-target (Cyberball: "ball possession of a co-player) events in both paradigms. Analyses mainly focused on the effect of altered stimulus probabilities of the target and non-target events between two consecutive blocks of the tasks. In the first block, the probability of the target and non-target event was 33% (Cyberball: inclusion), in the second block target probability was reduced to 17%, and accordingly, non-target probability was increased to 66% (Cyberball: exclusion). Our results indicate that ERP amplitude differences between inclusion and exclusion are comparable to ERP amplitude effects in a visual oddball task. We therefore suggest that ERP effects--especially in the P3 range--in the Oddball and Cyberball paradigm rely on similar mechanisms, namely the probability of target and non-target events. Since the simulation of social exclusion (Cyberball) did not trigger a unique ERP response, the idea of an exclusion-specific neural alarm system is not supported. The limitations of an ERP-based approach will be discussed.

ERP effects and perceived exclusion in the Cyberball paradigm: Correlates of expectancy violation?

A virtual ball-tossing game called Cyberball has allowed the identification of neural structures involved in the processing of social exclusion by using neurocognitive methods. However, there is still an ongoing debate if structures involved are either pain- or exclusion-specific or part of a broader network. In electrophysiological Cyberball studies we have shown that the P3b component is sensitive to exclusion manipulations, possibly modulated by the probability of ball possession of the participant (event "self") or the presumed co-players (event "other"). Since it is known from oddball studies that the P3b is not only modulated by the objective probability of an event, but also by subjective expectancy, we independently manipulated the probability of the events "self" and "other" and the expectancy for these events. Questionnaire data indicate that social need threat is only induced when the expectancy for involvement in the ball-tossing game is violated. Similarly, the P3b amplitude of both "self" and "other" events was a correlate of expectancy violation. We conclude that both the subjective report of exclusion and the P3b effect induced in the Cyberball paradigm are primarily based on a cognitive process sensitive to expectancy violations, and that the P3b is not related to the activation of an exclusion-specific neural alarm system.

Are there benefits of social overinclusion? Behavioral and ERP effects in the Cyberball paradigm.

Social participation can be examined using the Cyberball paradigm, a virtual ball-tossing game. Reducing the involvement of the participant is supposed to activate a neural alarm system, and to threaten fundamental social needs. Our previous findings indicate that the latter process can be linked to an enhancement of the centro-parietal P3 amplitude, signaling a modulation of the subjective expectancy of involvement. A preceding more frontal ERP component, the P2, does not depend of the probability of involvement, but reflects the appraisal of social reward. In this experiment, we examined whether overinclusion of participants enhances the satisfaction of social needs, reduces the P3 amplitude correspondingly, and affects central reward processing. In the control condition, participants (n = 40) were included (two co-player, ball possession 33%), and overincluded (ball possession 46%) in the experimental condition. In a counterbalanced design, we also controlled for the order of conditions. As predicted, overinclusion increased the satisfaction of social needs, with exception of "self esteem", and reduced the P3 amplitude. As for the frontal P2, overinclusion only enhanced the amplitudes if the less frequent involvement (condition: inclusion) was experienced previously. The behavioral and P3 data suggest that the feelings of social belonging, meaningful existence, and control are related to the subjective expectancy of social involvement, and can be described in terms of a linear continuum ranging from exclusion to overinclusion. In contrast, appraisal of social rewards does not depend on the probability of involvement.

The effect of the physical presence of co-players on perceived ostracism and event-related brain potentials in the cyberball paradigm.

The affective and cognitive mechanisms elicited by the experience of social exclusion-or ostracism-have recently been explored using behavioral and neurocognitive methods. Most of the studies took advantage of the Cyberball paradigm, a virtual ball tossing game with presumed co-players connected via the internet. Consistent behavioral findings indicate that exclusion obviously threatens fundamental social needs (belonging, self-esteem, meaningful existence, and control) and lowers mood. In this study, we followed the question whether the credibility of the setting affects the processing of social exclusion. In contrast to a control group (standard Cyberball setup), co-players were physically present in an experimental group. Although the credibility of the virtual ball tossing game was significantly enhanced in the experimental group, self-reported negative mood and need threat were not enhanced compared to the control group. Event-related brain potentials (ERPs), however, indicated a differential processing of social exclusion. The N2 amplitude triggered by occasional ball receptions was significantly reduced in the experimental group. This effect was restricted for an early time range (130-210 ms), and did not extend to the following P3 components. The ERP effect in the N2 time range can be related to a differential social reward processing in ostracism if co-players are physically present. The lack of a corresponding correlate in the behavioral data indicates that some facets of ostracism processing are not covered by questionnaire data.

Differential effects of moderate alcohol consumption on motion and contrast processing.

Although a moderate blood alcohol concentration already affects attention, an effect on early visual processing is still questionable. Using psychophysical measures and visually evoked potentials (VEP), we examined the effects of alcohol on the processing of contrast and motion features. In our tasks, two lateralized stimuli were briefly presented, and participants had to identify either the stimulus of higher contrast or motion coherence. In the contrast task, alcohol was found to decrease the discrimination ability and induced a global attenuation of VEP amplitudes. In the motion task, discrimination was not impaired. VEP amplitudes were reduced contralateral to the target position, indicating an effect of alcohol on the deployment of visuospatial attention. In sum, our data suggest that specialized areas for motion and contrast processing within the visual cortex are differently sensitive to moderate alcohol exposure.