Stakeholders’ Perspectives regarding Participation in Neuromodulation-Based Dementia Intervention Research

Author(s):  
Laura B. Dunn ◽  
Jane P. Kim ◽  
Maryam Rostami ◽  
Sangeeta Mondal ◽  
Katie Ryan ◽  
...  

This study evaluated stakeholders’ perspectives regarding participation in two hypothetical neuromodulation trials focused on individuals with Alzheimer's disease and related disorders (ADRDs). Stakeholders (i.e., individuals at risk for ADRDs [ n = 56], individuals with experience as a caregiver for someone with a cognitive disorder [ n = 60], and comparison respondents [ n = 124]) were recruited via MTurk. Primary outcomes were willingness to enroll (or enroll one's loved one), feeling lucky to have the opportunity to enroll, and feeling obligated to enroll in two protocols (transcranial magnetic stimulation, TMS; deep brain stimulation, DBS). Relative to the Comparison group, the At Risk group endorsed higher levels of “feeling lucky” regarding both research protocols, and higher willingness to participate in the TMS protocol. These findings provide tentative reassurance regarding the nature of decision making regarding neurotechnology-based research on ADRDs. Further work is needed to evaluate the full range of potential influences on research participation.

2021 ◽  
Vol 11 (8) ◽  
pp. 815
Author(s):  
Filipa Júlio ◽  
Ruth Blanco ◽  
Josè Perez Casanova ◽  
Barbara D’Alessio ◽  
Beatrice De Schepper ◽  
...  

There has been great progress in Huntington’s disease (HD) research. Yet, effective treatments to halt disease before the onset of disabling symptoms are still unavailable. Scientific breakthroughs require an active and lasting commitment from families. However, they are traditionally less involved and heard in studies. Accordingly, the European Huntington Association (EHA) surveyed individuals at risk (HDRisk) and with premanifest HD (PreHD) to determine which factors affect their willingness to participate in research. Questions assessed research experience and knowledge, information sources, reasons for involvement and noninvolvement, and factors preventing and facilitating participation. The survey included 525 individuals, of which 68.8% never participated in studies and 38.6% reported limited research knowledge. Furthermore, 52% trusted patient organizations to get research information. Reasons for involvement were altruistic and more important than reasons for noninvolvement, which were related to negative emotions. Obstacles included time/financial constraints and invasive procedures, while professional support was seen as a facilitator. PreHD individuals reported less obstacles to research participation than HDRisk individuals. Overall, a high motivation to participate in research was noted, despite limited experience and literacy. This motivation is influenced by subjective and objective factors and, importantly, by HD status. Patient organizations have a key role in fostering motivation through education and support.


Author(s):  
A.Yu. Blinov

A simple ultrasound test is proposed that can be used as a screening method to detect a fetus at risk group for presence of a bicuspid aortic valve.


2012 ◽  
Vol 2012 ◽  
pp. 1-6 ◽  
Author(s):  
Ashish Atreja ◽  
Ashish Aggarwal ◽  
Angelo A. Licata ◽  
Bret A. Lashner

Background. Patients with inflammatory bowel disease (IBD) are at high risk of developing osteoporosis. Our objective was to determine the usefulness of IBD guidelines in identifying patients at risk for developing osteoporosis.Methods. We utilized institutional repository to identify patients seen in IBD center and extracted data on demographics, disease history, conventional, and nonconventional risk factors for osteoporosis and Dual Energy X-ray Absorptiometry (DXA) findings.Results. 59% of patients (1004/1703) in our IBD cohort had at least one risk factor for osteoporosis screening. DXA was documented in 263 patients with indication of screening (provider adherence, 26.2%), and of these, 196 patients had DXA completed (“at-risk” group). Ninety-five patients not meeting guidelines-based risk factors also had DXA completed (“not at-risk” group). 139 (70.9%) patients in “at-risk” group had low BMD, while 51 (53.7%) of “not-at-risk” patients had low BMD. Majority of the patients with osteoporosis (83.3%) missed by the current guidelines had low BMI. Multivariate logistic regression analysis showed that low BMI was the strongest risk factor for osteoporosis (OR 3.07; 95% CI, 1.47–6.42;P=0.003).Conclusions. Provider adherence to current guidelines is suboptimal. Low BMI can identify majority of the patients with osteoporosis that are missed by current guidelines.


2007 ◽  
Vol 37 (5) ◽  
pp. 790 ◽  
Author(s):  
Eui Geum Oh ◽  
So Youn Bang ◽  
Sa Saeng Hyun ◽  
Sang Hui Chu ◽  
Y Justin Jeon ◽  
...  

Sexual Health ◽  
2008 ◽  
Vol 5 (4) ◽  
pp. 359 ◽  
Author(s):  
Bernadette Zakher ◽  
Melissa Kang

Background: Chlamydia screening of sexually active young people in general practice is key to the Australian National Sexually Transmissible Infections Strategy 2005–2008. Overseas research indicates that young people have positive attitudes towards opportunistic screening by a general practitioner (GP). This pilot study aims to investigate the attitudes of Australian university students towards chlamydia screening in primary care. Methods: Students (16–25 years) attending a class in one of three faculties at the University of Sydney participated by completing a questionnaire, which collected information about demographics, sexual history, chlamydia knowledge, attitudes towards and preferences for chlamydia screening. Results: One hundred and eighty-five students (78% female) returned questionnaires (participation rate 92%). Arts students were younger, more likely to be sexually active and to report having little or no knowledge of chlamydia. Males in the study were less likely to have had sex as a group compared to the group of females in the sample. Science students were also less likely to have had sex compared to their counterparts in other faculties. Seventy-six percent of students were comfortable with opportunistic testing for chlamydia by their GP. Reasons for not being comfortable included ‘don’t think I’m at risk’ (65%) and ‘not comfortable discussing sexual matters with my GP’ (38%). Although comfortable with GP-based testing, the likelihood of being tested in the upcoming year for most students was low, as was personal concern about chlamydia infection. Conclusions: Findings suggest that the most at risk group for chlamydia infection is not well educated about their risk of infection. The limited numbers of tests among sexually active individuals in this sample indicate that health practitioners are not screening this high-risk group for chlamydia infection.


10.2196/17758 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e17758 ◽  
Author(s):  
Diana Ramírez-Cifuentes ◽  
Ana Freire ◽  
Ricardo Baeza-Yates ◽  
Joaquim Puntí ◽  
Pilar Medina-Bravo ◽  
...  

Background Suicide risk assessment usually involves an interaction between doctors and patients. However, a significant number of people with mental disorders receive no treatment for their condition due to the limited access to mental health care facilities; the reduced availability of clinicians; the lack of awareness; and stigma, neglect, and discrimination surrounding mental disorders. In contrast, internet access and social media usage have increased significantly, providing experts and patients with a means of communication that may contribute to the development of methods to detect mental health issues among social media users. Objective This paper aimed to describe an approach for the suicide risk assessment of Spanish-speaking users on social media. We aimed to explore behavioral, relational, and multimodal data extracted from multiple social platforms and develop machine learning models to detect users at risk. Methods We characterized users based on their writings, posting patterns, relations with other users, and images posted. We also evaluated statistical and deep learning approaches to handle multimodal data for the detection of users with signs of suicidal ideation (suicidal ideation risk group). Our methods were evaluated over a dataset of 252 users annotated by clinicians. To evaluate the performance of our models, we distinguished 2 control groups: users who make use of suicide-related vocabulary (focused control group) and generic random users (generic control group). Results We identified significant statistical differences between the textual and behavioral attributes of each of the control groups compared with the suicidal ideation risk group. At a 95% CI, when comparing the suicidal ideation risk group and the focused control group, the number of friends (P=.04) and median tweet length (P=.04) were significantly different. The median number of friends for a focused control user (median 578.5) was higher than that for a user at risk (median 372.0). Similarly, the median tweet length was higher for focused control users, with 16 words against 13 words of suicidal ideation risk users. Our findings also show that the combination of textual, visual, relational, and behavioral data outperforms the accuracy of using each modality separately. We defined text-based baseline models based on bag of words and word embeddings, which were outperformed by our models, obtaining an increase in accuracy of up to 8% when distinguishing users at risk from both types of control users. Conclusions The types of attributes analyzed are significant for detecting users at risk, and their combination outperforms the results provided by generic, exclusively text-based baseline models. After evaluating the contribution of image-based predictive models, we believe that our results can be improved by enhancing the models based on textual and relational features. These methods can be extended and applied to different use cases related to other mental disorders.


2017 ◽  
Vol 15 (2) ◽  
pp. 19-31
Author(s):  
S.A. Morozov ◽  
S.S. Morozova ◽  
T.I. Morozova

Early help for children with autism spectrum disorders is the most effective way of intervention for disorders. In the process of identifying children at risk of autistic disorders, correctional work should begin before the official diagnosis has been made. It should start in the process of diagnosis, which leads to the risk of noting false-positive cases. The empirical and theoretical grounds for the necessity for early care in autism spectrum disorders are examined. Features of early care for children at high risk of developing disorders are also de¬scribed. The stages of early diagnosis of autism spectrum disorders are identified and compared with the stages of early care for such children. The strategy of early care methodological support for children at risk is defined. Propositions for practical realizations of the Concept of developing early support in Russian Federation in the period until 2020 for the risk group concerning autism spectrum disorders.


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