Introduction
We conducted a systematic literature review and meta‐analysis of empirical evidence on expected and experienced implications of sharing Alzheimer's disease (AD) biomarker results with ...individuals without dementia.
Methods
PubMed, Embase, APA PsycInfo, and Web of Science Core Collection were searched according to Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Results from included studies were synthesized, and quantitative data on psychosocial impact were meta‐analyzed using a random‐effects model.
Results
We included 35 publications. Most personal stakeholders expressed interest in biomarker assessment. Learning negative biomarker results led to relief and sometimes frustration, while positive biomarkers induced anxiety but also clarity. Meta‐analysis of five studies including 2012 participants (elevated amyloid = 1324 66%, asymptomatic = 1855 92%) showed short‐term psychological impact was not significant (random‐effect estimate = 0.10, standard error = 0.23, P = 0.65). Most professional stakeholders valued biomarker testing, although attitudes and practices varied considerably.
Discussion
Interest in AD biomarker testing was high and sharing their results did not cause psychological harm.
Highlights
Most personal stakeholders expressed interest in Alzheimer's disease biomarker assessment.
Personal motivations included gaining insight, improving lifestyle, or preparing for the future.
There was no short‐term psychological impact of sharing biomarker status, implying it can be safe.
Most professional stakeholders valued biomarker testing, believing the benefits outweigh the risk.
Harmonized guidelines on biomarker testing and sharing results are required.
Highlights • For a video-vignette design to be ecologically valid, analogue patients (APs) should be engaged. • Patients and disease-naïve individuals were compared on their engagement with the ...vignette. • Engagement was assessed by using self-report and in the form of psychophysiological arousal. • Being (former) patient or disease-naïve was not a major determinant of APs’ engagement. • Older age was associated with higher self-reported engagement and blood pressure.
Introduction
Empirical studies on effective communication for amyloid disclosure in mild cognitive impairment (MCI) are lacking. We aimed to study the impact of six communication strategies.
Method
...We performed a randomized controlled trial with seven randomly assigned, video‐vignette conditions: six emphasizing a communication strategy and one basic condition. All showed a scripted consultation of a neurologist disclosing positive amyloid positron emission tomography (PET) scan results to an MCI patient. Healthy individuals (N = 1017; mean age ± SD 64 ± 8, 808 (79%) female) were instructed to imagine themselves in the video, answered questionnaires assessing information recall, emotional state, and behavioral intentions, and evaluate the physician/information.
Results
“Risk best practice” resulted in highest free recall compared to other strategies (P < .05), except “emotional support”. Recall in “emotional support” was better compared to “basic‐‘ and elaborate information”(P < .05). “Risk best practice” resulted in the highest uncertainty (P < .001). “Teach‐back” and “emotional support” contributed to the highest evaluations (P ‐values < .01).
Conclusion
Risk communication best practices, attending to emotions, and teach‐back techniques enhance information recall of amyloid‐PET results, and could contribute to positive care evaluations.
•Experimental vignette designs enable systematically testing medical communication.•We sought to advance methodological guidance to researchers using experimental vignettes.•Analogue patients’ ...engagement was not affected by gender congruence or vignette modality.•Creating gender congruent and/or video vignettes may not always be necessary.•Methodological decisions on vignette development should depend on study aims.
Experimental vignette designs are used to systematically test the effects of medical communication. We tested the impact of two methodological choices –gender congruence and vignette modality– on analogue patient reported outcomes.
In an online experiment using a vignette portraying an oncological bad news consultation, we manipulated (1) gender congruence between the analogue and the vignette patient, and (2) vignette modality, i.e., text, audio, or video. Cancer-naïve students acting as analogue patients (N = 209, 22 ± 3 years old, 75% F) were assigned one randomly-selected vignette variant and completed questionnaires. Using 3 × 2 (repeated-measures) ANOVAs, we tested main and interaction effects of gender congruence and modality on self-reported engagement, recall, trust, satisfaction and anxiety.
We found no main effects of gender congruence or modality on any of the outcomes, nor any interaction effects between modality and congruence.
Our results indicate that researchers may needlessly create gender-congruent vignettes at considerable cost and effort. Also, the currently assumed superiority of videos over other modalities for experimental vignette-based research may be inaccurate.
Although further testing in an offline format and among different populations is warranted, decisions regarding gender congruence and modality for future vignette-based studies should be based primarily on their specific aims.
Video vignettes are used to test the effects of physicians' communication on patient outcomes. Methodological choices in video-vignette development may have far-stretching consequences for ...participants' engagement with the video, and thus the ecological validity of this design. To supplement the scant evidence in this field, this study tested how variations in video-vignette introduction format and camera focus influence participants' engagement with a video vignette showing a bad news consultation.
Introduction format (A = audiovisual vs. B = written) and camera focus (1 = the physician only, 2 = the physician and the patient at neutral moments alternately, 3 = the physician and the patient at emotional moments alternately) were varied in a randomized 2 × 3 between-subjects design. One hundred eighty-one students were randomly assigned to watch one of the six resulting video-vignette conditions as so-called analogue patients, i.e., they were instructed to imagine themselves being in the video patient's situation. Four dimensions of self-reported engagement were assessed retrospectively. Emotional engagement was additionally measured by recording participants' electrodermal and cardiovascular activity continuously while watching. Analyses of variance were used to test the effects of introduction format, camera focus and their interaction.
The audiovisual introduction induced a stronger blood pressure response during watching the introduction (p = 0.048, Formula: see text= 0.05) and the consultation part of the vignette (p = 0.051, Formula: see text= 0.05), when compared to the written introduction. With respect to camera focus, results revealed that the variant focusing on the patient at emotional moments evoked a higher level of electrodermal activity (p = 0.003, Formula: see text= 0.06), when compared to the other two variants. Furthermore, an interaction effect was shown on self-reported emotional engagement (p = 0.045, Formula: see text= 0.04): the physician-only variant resulted in lower emotional engagement if the vignette was preceded by the audiovisual introduction. No effects were shown on the other dimensions of self-reported engagement.
Our findings imply that using an audiovisual introduction combined with alternating camera focus depicting patient's emotions results in the highest levels of emotional engagement in analogue patients. This evidence can inform methodological decisions during the development of video vignettes, and thereby enhance the ecological validity of future video-vignettes studies.
We aim to investigate the frequency and type of sleep problems in memory clinic patients with subjective cognitive decline (SCD) and their association with cognition, mental health, brain magnetic ...resonance imaging (MRI), and cerebrospinal fluid (CSF) biomarkers. Three hundred eight subjects (65 ± 8 years, 44% female) were selected from the Subjective Cognitive Impairment Cohort (SCIENCe) project. All subjects answered two sleep questionnaires, Berlin Questionnaire (sleep apnea) and Pittsburgh Sleep Quality Index (sleep quality) and underwent a standardized memory clinic work‐up. One hundred ninety‐eight (64%) subjects reported sleep problems, based on 107 (35%) positive screenings on sleep apnea and 162 (53%) on poor sleep quality. Subjects with sleep problems reported more severe depressive symptoms, more anxiety, and more severe SCD. Cognitive tests, MRI, and CSF biomarkers did not differ between groups. Our results suggest that improvement of sleep quality and behaviors are potential leads for treatment in many subjects with SCD to relieve the experienced cognitive complaints.
Background
The development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the ...cause of symptoms, yet does not always provide patients with the desired certainty.
Objective
To examine, using both quantitative and qualitative methods, uncertainty communicated by memory clinic clinicians in post‐diagnostic testing consultations with patients and their caregivers.
Methods
First, we identified all uncertainty expressions of 22 clinicians in audiotaped post‐diagnostic testing consultations with 78 patients. Second, we statistically explored relationships between patient/clinician characteristics and uncertainty expressions. Third, the transcribed uncertainty expressions were qualitatively analysed, determining the topic to which they pertained, their source and initiator/elicitor (clinicians/patients/caregivers).
Results
Within 57/78 (73%) consultations, clinicians expressed in total 115 uncertainties, of which 37% elicited by the patient or caregiver. No apparent relationships were found between patient/clinician characteristics and whether or not, and how often clinicians expressed uncertainty. Uncertainty expressions pertained to ten different topics, most frequently patient's diagnosis and symptom progression. Expressed uncertainty was mostly related to the unpredictability of the future and limits to available knowledge.
Discussion and conclusions
The majority of clinicians openly discussed the limits of scientific knowledge and diagnostic testing with patients and caregivers in the dementia context. Noticeably, clinicians did not discuss uncertainty in about one quarter of consultations. More evidence is needed on the beneficial and/or harmful effects on patients of discussing uncertainty with them. This knowledge can be used to support clinicians to optimally convey uncertainty and facilitate patients' uncertainty management.
Unhealthy behavior increases the risk of dementia. Various socio-cognitive determinants influence whether individuals persist in or alter these unhealthy behaviors.
This study identifies relevant ...determinants of behavior associated to dementia risk.
4,104 Dutch individuals (40-79 years) completed a screening questionnaire exploring lifestyle behaviors associated with dementia risk. Subsequently, 3,065 respondents who engaged in one or more unhealthy behaviors completed a follow-up questionnaire investigating socio-cognitive determinants of these behaviors. Cross-tables were used to assess the accuracy of participants' perceptions regarding their behavior compared to recommendations. Confidence Interval-Based Estimation of Relevance (CIBER) was used to identify the most relevant determinants of behavior based on visual inspection and interpretation.
Among the respondents, 91.3% reported at least one, while 65% reported two or more unhealthy lifestyle behaviors associated to dementia risk. Many of them were not aware they did not adhere to lifestyle recommendations. The most relevant determinants identified include attitudes (i.e., lacking a passion for cooking and finding pleasure in drinking alcohol or smoking), misperceptions on social comparisons (i.e., overestimating healthy diet intake and underestimating alcohol intake), and low perceived behavioral control (i.e., regarding changing physical inactivity, altering diet patterns, and smoking cessation).
Individual-level interventions that encourage lifestyle change should focus on enhancing accurate perceptions of behaviors compared to recommendations, while strengthening perceived control towards behavior change. Given the high prevalence of dementia risk factors, combining interventions at both individual and environmental levels are likely to be the most effective strategy to reduce dementia on a population scale.
Background
The COVID-19 pandemic has major influence on lifestyle and mental health, which might affect brain-health and increase the risk of cognitive decline, particularly in older adults. We aimed ...to describe changes in modifiable risk factors related to brain-health in older adults after one year of COVID-19 restrictions.
Methods
An online survey was disseminated between February and March 2021 to 17,773 registrants of the Dutch Brain Research Registry, aged ≥50, without a self-reported diagnosis of mild cognitive impairment or dementia. Participants were asked to report potential changes in behaviors during the COVID-19 pandemic, compared to pre-pandemic, in eight domains related to brain health: physical activity, sleep, feeling of memory decline, perceived stress, feeling of loneliness, diet, alcohol consumption, and smoking. We used negative binomial regression analyses to relate (socio)demographics, subjective memory complaints and COVID-19 related aspects (fear of, or current/past COVID-19 infection) to the number of reported detrimental and beneficial changes as dependent variable.
Results
3,943 participants (66 ± 8 years old; 76% female; 71% highly educated) completed the survey. After one year of COVID-19-restrictions, 74% reported at least one detrimental lifestyle change unfavorable for their brain health, most frequently reported were feelings of loneliness, sleep problems, and less physical activity. 60% of participants reported at least one beneficial change, which were most often more physical activity, healthier dietary habits, and less alcohol consumption. Individuals who are younger incidence rate ratio (IRR) = 0.99, 95% CI = 0.98–0.99, female (1.20, 1.11–1.30), living alone (1.20, 1.11–1.28) and in urban environments (1.18, 1.08–1.29), who are less satisfied with their income (1.38, 1.17–1.62), experiencing subjective memory complaints (1.40, 1.28–1.52) and those with a past or current (1.19, 1.06–1.34) or fear of a COVID-19 infection (1.33, 1.25–1.42) reported higher numbers of detrimental changes.
Discussion
The COVID-19 pandemic has influenced lifestyle in both positive and negative ways. We identified (socio)demographic factors associated with more detrimental changes in modifiable risk factors related to brain health, suggesting that some individuals are more vulnerable for the impact of the COVID-19 pandemic. These findings provide an opportunity for targeted prevention and education to promote a healthy lifestyle during and after the pandemic.
In the Iowa Gambling Task (IGT) subjects need to find a way to earn money in a context of variable wins and losses, conflicting short-term and long-term pay-off, and uncertainty of outcomes. In 2006, ...we published the first rodent version of the IGT (r-IGT; Behavior Research Methods 38, 470-478). Here, we discuss emerging ideas on the involvement of different prefrontal-striatal networks in task-progression in the r-IGT, as revealed by our studies thus far. The emotional system, encompassing, among others, the orbitofrontal cortex, infralimbic cortex and nucleus accumbens (shell and core area), may be involved in assessing and anticipating the value of different options in the early stages of the task, i.e., as animals explore and learn task contingencies. The cognitive control system, encompassing, among others, the prelimbic cortex and dorsomedial striatum, may be involved in instrumental goal-directed behavior in later stages of the task, i.e., as behavior toward long-term options is strengthened (reinforced) and behavior toward long-term poor options is weakened (punished). In addition, we suggest two directions for future research: (1) the role of the internal state of the subject in decision-making, and (2) studying differences in task-related costs. Overall, our studies have contributed to understanding the interaction between the emotional system and cognitive control system as crucial to navigating human and non-human animals alike through a world of variable wins and losses, conflicting short-term and long-term pay-offs, and uncertainty of outcomes.
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