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2022 ◽  
Vol 13 ◽  
Author(s):  
Merike Verrijp ◽  
Mark A. Dubbelman ◽  
Leonie N. C. Visser ◽  
Roos J. Jutten ◽  
Elke W. Nijhuis ◽  
...  

Introduction: Impaired awareness in dementia caused by Alzheimer’s disease and related disorders made study partner-report the preferred method of measuring interference in “instrumental activities of daily living” (IADL). However, with a shifting focus toward earlier disease stages and prevention, the question arises whether self-report might be equally or even more appropriate. The aim of this study was to investigate how participant- and study partner-report IADL perform in a community-based volunteer population without dementia and which factors relate to differences between participant- and study partner-report.Methods: Participants (N = 3,288; 18–97 years, 70.4% females) and their study partners (N = 1,213; 18–88 years, 45.8% females) were recruited from the Dutch Brain Research Registry. IADL were measured using the Amsterdam IADL Questionnaire. The concordance between participant- and study partner-reported IADL difficulties was examined using intraclass correlation coefficient (ICC). Multinomial logistic regressions were used to investigate which demographic, cognitive, and psychosocial factors related to participant and study partner differences, by looking at the over- and underreport of IADL difficulties by the participant, relative to their study partner.Results: Most A-IADL-Q scores represented no difficulties for both participants (87.9%) and study partners (89.4%). The concordance between participants and study partners was moderate (ICC = 0.55, 95% confidence interval [CI] = [0.51, 0.59]); 24.5% (N = 297) of participants overreported their IADL difficulties compared with study partners, and 17.8% (N = 216) underreported difficulties. The presence of depressive symptoms (odds ratio [OR] = 1.31, 95% CI = [1.12, 1.54]), as well as memory complaints (OR = 2.45, 95% CI = [1.80, 3.34]), increased the odds of participants overreporting their IADL difficulties. Higher IADL ratings decreased the odds of participant underreport (OR = 0.71, 95% CI = [0.67, 0.74]).Conclusion: In this sample of community-based volunteers, most participants and study partners reported no major IADL difficulties. Differences between participant and study partner were, however, quite prevalent, with subjective factors indicative of increased report of IADL difficulties by the participant in particular. These findings suggest that self- and study partner-report measures may not be interchangeable, and that the level of awareness needs to be considered, even in cognitively healthy individuals.


2021 ◽  
Vol 17 (S6) ◽  
Author(s):  
Merike Verrijp ◽  
Mark A. Dubbelman ◽  
Leonie N.C. Visser ◽  
Roos J. Jutten ◽  
Elke W Nijhuis ◽  
...  

2021 ◽  
Vol 17 (S6) ◽  
Author(s):  
Catherine E Munro ◽  
Rachel F. Buckley ◽  
Patrizia Vannini ◽  
Reisa A. Sperling ◽  
Dorene M. Rentz ◽  
...  

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 211-211
Author(s):  
Junxin Li ◽  
Justine Sefcik ◽  
Darina Petrovsky ◽  
Glenna Brewster ◽  
Nancy Hodgson ◽  
...  

Abstract There is a paucity of research focused on monetary incentives for recruiting dyads (participants with cognitive impairment and study partners) into research. Our objective was to evaluate if two different variations in allocating compensation among dyads changed consent rates in one clinical trial, Memories2. This trial is evaluating cognitive and functional outcomes of obstructive sleep apnea treatment in patients with amnestic mild cognitive impairment (aMCI). Prior to phone screening, participants were randomly assigned to one of two groups (1) $200 to participant with aMCI or (2) $100 to participant with aMCI and $100 to study partner at consent visit. Allocating all the payment to the participant with aMCI yielded a 2.6% consent rate, while splitting the payment yielded at 1.7% consent rate. We will also discuss how demographic factors affected consent decision by group. This study provides insight into novel strategies that may enhance enrollment of dyads into clinical trials.


2021 ◽  
Vol 17 (S6) ◽  
Author(s):  
Rachel L Nosheny ◽  
Chengshi Jin ◽  
Timothy Banh ◽  
Miriam T. Ashford ◽  
Monica R Camacho ◽  
...  

2021 ◽  
Author(s):  
Merike Verrijp ◽  
Mark A Dubbelman ◽  
Leonie N.C. Visser ◽  
Roos J Jutten ◽  
Elke W Nijhuis ◽  
...  

INTRODUCTION: Impaired awareness in dementia due to Alzheimers disease and related disorders, made study partner-report the preferred method of measuring interference in instrumental activities of daily living (IADL). However, with a shifting focus towards earlier disease stages and prevention, the question arises whether self report might be equally or even more appropriate. This study aims to investigate how participant and study partner report IADL perform in a community based volunteer population without dementia, and which factors relate to differences between participant and study partner report. METHODS: Participants (N=3288; 18 to 97 years, 70.4% females) and their study partners (N=1213; 18 to 88 years, 45.8% females) were recruited from the Dutch brain research registry. IADL was measured using the Amsterdam IADL Questionnaire. Concordance between participant and study partner-reported IADL difficulties was examined using intraclass correlation coefficient (ICC). Multinomial logistic regressions were used to investigate which demographic, cognitive and psychosocial factors related to participant and study partner differences, by looking at the over and underreport of IADL difficulties by the participant, relative to their study partner. RESULTS: The vast majority of Amsterdam IADL scores represented no difficulties for both participants (87.9%) and study partners (89.4%). Concordance between participants and study partners was moderate (ICC=.55, 95%CI=[.51, .59]), 24.5% (N=297) of participants overreported their IADL difficulties compared to study partners, and 17.8% (N=216) underreported difficulties. The presence of depressive symptoms (odds ratio (OR)=1.31, 95%CI=[1.12, 1.54]), as well as memory complaints (OR=2.45, 95%CI=[1.80, 3.34]), increased the odds of participants overreporting their IADL difficulties. Higher IADL ratings decreased the odds of participant underreport (OR=0.71, 95%CI=[0.67, 0.74]). CONCLUSION: In this sample of community based volunteers, the majority of participants and study partners reported no major IADL difficulties. Differences between participant and study partner were, however, quite prevalent, with subjective factors indicative of increased report of IADL difficulties by the participant in particular. These findings suggest that self and study partner report measures may not be interchangeable, and that the level of awareness needs to be taken into account, even in cognitively healthy individuals.


2021 ◽  
Author(s):  
Katherine O'Connell ◽  
Marissa Walsh ◽  
Brandon Padgett ◽  
Sarah Connell ◽  
Abigail Marsh

Empathic experiences shape social behaviors and display considerable individual variation. Recent advances in computational behavioral modeling can help rigorously quantify individual differences, but remain understudied in the context of empathy and antisocial behavior. We adapted a go/no-go reinforcement learning task across social and non-social contexts such that monetary gains and losses explicitly impacted the subject, a study partner, or no one. Empathy was operationalized as sensitivity to others’ rewards, sensitivity to others’ losses, and as the Pavlovian influence of empathic outcomes on approach and avoidance behavior. Results showed that 61 subjects learned for a partner in a way that was computationally similar to how they learned for themselves. Results supported the psychometric value of individualized model parameters such as sensitivity to others’ loss, which was inversely associated with antisociality. Modeled empathic sensitivity also mapped onto motivation ratings, but was not associated with self-reported trait empathy. This work is the first to apply a social reinforcement learning task that spans affect and action requirement (go/no-go) to measure multiple facets of empathic sensitivity.


Author(s):  
Jairo E. Martinez ◽  
Enmanuelle Pardilla-Delgado ◽  
Edmarie Guzmán-Vélez ◽  
Clara Vila-Castelar ◽  
Rebecca Amariglio ◽  
...  

Abstract Objective: Subjective Cognitive Decline (SCD) may be an early indicator of risk for Alzheimer’s disease (AD). Findings regarding sex differences in SCD are inconsistent. Studying sex differences in SCD within cognitively unimpaired individuals with autosomal-dominant AD (ADAD), who will develop dementia, may inform sex-related SCD variations in preclinical AD. We examined sex differences in SCD within cognitively unimpaired mutation carriers from the world’s largest ADAD kindred and sex differences in the relationship between SCD and memory performance. Methods: We included 310 cognitively unimpaired Presenilin-1 (PSEN-1) E280A mutation carriers (51% females) and 1998 noncarrier family members (56% females) in the study. Subjects and their study partners completed SCD questionnaires and the CERAD word list delayed recall test. ANCOVAs were conducted to examine group differences in SCD, sex, and memory performance. In carriers, partial correlations were used to examine associations between SCD and memory performance covarying for education. Results: Females in both groups had greater self-reported and study partner-reported SCD than males (all p < 0.001). In female mutation carriers, greater self-reported (p = 0.02) and study partner-reported SCD (p < 0.001) were associated with worse verbal memory. In male mutation carriers, greater self-reported (p = 0.03), but not study partner-reported SCD (p = 0.11) was associated with worse verbal memory. Conclusions: Study partner-reported SCD may be a stronger indicator of memory decline in females versus males in individuals at risk for developing dementia. Future studies with independent samples and preclinical trials should consider sex differences when recruiting based on SCD criteria.


2021 ◽  
Author(s):  
Kat Toups ◽  
Ann Hathaway ◽  
Deborah Gordon ◽  
Henrianna Chung ◽  
Cyrus Raji ◽  
...  

Abstract Importance: Effective therapeutics for Alzheimer's disease and mild cognitive impairment are needed. Objective: To determine whether a precision medicine approach to Alzheimer's disease and mild cognitive impairment, in which potential contributors to cognitive decline are identified and targeted therapeutically, is effective enough in a proof-of-concept trial to warrant a larger, randomized, controlled clinical trial. Rationale: Previous clinical trials for Alzheimer's disease have pre-determined a single treatment modality, such as a drug candidate or therapeutic procedure, that may be unrelated to the primary drivers of the neurodegenerative process. Therefore, increasing data set size to include the potential contributors to cognitive decline for each patient, and addressing the identified potential contributors, may represent a more effective therapeutic strategy. Hypothesis: Alzheimer's disease is a multi-factorial network dysfunction that results from a chronic or repeated insufficiency of support for a neuroplasticity network; thus factors that increase demand — such as infections or toxin exposure — or reduce support — such as reduced energetics or trophic support — may contribute to the neurodegenerative process. Rectifying this hypothesized network dysfunction represents a rational approach to the treatment of the cognitive decline associated with Alzheimer's disease and mild cognitive impairment. Design: Twenty-five patients with Alzheimer's disease or mild cognitive impairment, with Montreal Cognitive Assessment (MoCA) scores of 19 or higher, were evaluated for markers of inflammation, chronic infection, dysbiosis, insulin resistance, protein glycation, vascular disease, nocturnal hypoxemia, hormone insufficiency or dysregulation, nutrient deficiency, toxin or toxicant exposure (metals, organic toxicants, and biotoxins), genetic predisposition to cognitive decline, and other biochemical parameters associated with cognitive decline. Brain magnetic resonance imaging with volumetrics was performed at baseline and study conclusion. Patients were treated for nine months with a personalized, precision medicine protocol that addressed each patient's identified potentially contributory factors, and cognition was assessed at t = 0, 3, 6, and 9 months. Trial registration and IRB approval: The clinical trial was registered at clinicaltrials.gov (NCT03883633), 1 and approved by the Advarra IRB. Support for the trial: The trial was supported by a grant from the Four Winds Foundation via Evanthea, LLC, and we are grateful to Diana Merriam and Gayle Brown for their interest, discussions, and support. Main Outcome Measures: Trained external raters evaluated the study subjects with the Montreal Cognitive Assessment (MoCA), CNS Vital Signs (a computerized cognitive assessment battery), AQ-21 (a subjective scale completed by the significant other or study partner), and AQ-C change scale (a subjective scale of cognitive improvement or decline, completed by the significant other or study partner). Follow-up brain MRI with volumetrics was carried out at the completion of the trial. Results: All outcome measures revealed improvement: statistically highly significant improvement in MoCA scores, CNS Vital Signs Neurocognitive Index, and AQ-C were documented. No serious adverse events were recorded. Conclusions and Relevance: Based on the cognitive improvements observed in this study of patients with Alzheimer's disease or mild cognitive impairment, a larger, randomized, controlled trial of the precision medicine therapeutic approach described herein is warranted.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Amanda A. Lee ◽  
Maia Ingram ◽  
Carolina Quijada ◽  
Andres Yubeta ◽  
Imelda Cortez ◽  
...  

Abstract Background Throughout the United States, low-wage, minority workers are disproportionately affected by occupational illnesses and injuries. Chronic exposure to hazardous chemicals at work can lead to serious illnesses, contributing to health inequities. In this article, we expand on theories of ‘responsibilization’ in an occupational health context to reveal how responsibilities for workplace chemical exposures are negotiated by workers and owners in Latinx-owned small businesses. Methods We conducted semi-structured interviews with a total of 22 workers and owners in auto repair shops and beauty salons – two high-risk industries – in Southern Metropolitan Tucson. Participants were asked about their insights into workplace chemical exposures and health. A qualitative analysis team with representation from all study partner organizations collectively coded and reviewed the interview data in QSR International’s NVivo 11 and identified overarching themes across the interviews. Results We identified three primary themes: 1) ambivalence toward risks in the workplace; 2) shifting responsibilities for exposure protection at work; and 3) reflections on the system behind chemical exposure risks. Participants discussed the complexities that small businesses face in reducing chemical exposures. Conclusions Through our analysis of the interviews, we examine how neoliberal occupational and environmental policies funnel responsibility for controlling chemical exposures down to individuals in small businesses with limited resources, obscuring the power structures that maintain environmental health injustices. We conclude with a call for upstream policy changes that more effectively regulate and hold accountable the manufacturers of chemical products used daily by small business workers.


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