Integrated Care in Neurology: The Current Landscape and Future Directions.

The rising burden of neurological disorders poses significant challenges to healthcare systems worldwide. There has been an increasing momentum to apply integrated approaches to the management of several chronic illnesses in order to address systemic healthcare challenges and improve the quality of care for patients. The aim of this paper is to provide a narrative review of the current landscape of integrated care in neurology. We identified a growing body of research from countries around the world applying a variety of integrated care models to the treatment of common neurological conditions. Based on our findings, we discuss opportunities for further study in this area. Finally, we discuss the future of integrated care in Canada, including unique geographic, historical, and economic considerations, and the role that integrated care may play in addressing challenges we face in our current healthcare system.

The QUEST for quality online health information: validation of a short quantitative tool.

BACKGROUND: Online health information is unregulated and can be of highly variable quality. There is currently no singular quantitative tool that has undergone a validation process, can be used for a broad range of health information, and strikes a balance between ease of use, concision and comprehensiveness. To address this gap, we developed the QUality Evaluation Scoring Tool (QUEST). Here we report on the analysis of the reliability and validity of the QUEST in assessing the quality of online health information. METHODS: The QUEST and three existing tools designed to measure the quality of online health information were applied to two randomized samples of articles containing information about the treatment (n = 16) and prevention (n = 29) of Alzheimer disease as a sample health condition. Inter-rater reliability was assessed using a weighted Cohen's kappa (κ) for each item of the QUEST. To compare the quality scores generated by each pair of tools, convergent validity was measured using Kendall's tau (τ) ranked correlation. RESULTS: The QUEST demonstrated high levels of inter-rater reliability for the seven quality items included in the tool (κ ranging from 0.7387 to 1.0, P < .05). The tool was also found to demonstrate high convergent validity. For both treatment- and prevention-related articles, all six pairs of tests exhibited a strong correlation between the tools (τ ranging from 0.41 to 0.65, P < .05). CONCLUSIONS: Our findings support the QUEST as a reliable and valid tool to evaluate online articles about health. Results provide evidence that the QUEST integrates the strengths of existing tools and evaluates quality with equal efficacy using a concise, seven-item questionnaire. The QUEST can serve as a rapid, effective, and accessible method of appraising the quality of online health information for researchers and clinicians alike.

Access to genetic testing for rare diseases: Existing gaps in public-facing information.

Genetic testing plays an increasingly important role in the diagnosis and potential treatment of inherited and rare conditions, such as aniridia-a disease that leads to abnormal eye development, as well as in health research on these conditions. As genetic testing is increasingly sought for accurate and early diagnosis of rare genetic disorders and in the context of direct-to-consumer genomics, it is critical to examine the public-facing information about access to these services and reimbursement policies. We conducted a targeted policy and public-facing resource search. Our analysis of resources available for the patient community revealed that there is very little practical guidance available about access and reimbursement for genetic testing for rare diseases. Greater clarity in public-facing resources about genetic testing would be beneficial to the patient community as it would promote informed choices about the procedure, mitigate potential harms associated with lack of information and enable patient engagement in their own health care.

Chemogenetic inhibition of dopaminergic projections to the nucleus accumbens has sexually dimorphic effects in the rat gambling task.

Women and men can differ in their propensity to take risks and develop impulse control and addiction disorders. Sexual dimorphisms in behavioral control by the mesolimbic dopaminergic reward system may underlie these phenomena, given its sensitivity to gonadal hormones. However, this is hard to test experimentally using humans. Using the rat gambling task (rGT), we investigated what impact acute inhibition of accumbal dopamine had on decision-making and impulsivity in animals of both sexes. We expressed an inhibitory designer receptor exclusively activated by designer drugs (hM4D[Gi]) in the accumbal dopaminergic efferents of female and male transgenic (Tg) rats, engineered to selectively express cre recombinase in neurons synthesizing tyrosine hydroxylase. We then trained the rats to perform the rGT and assessed the effect of an acute clozapine-n-oxide (0-3 mg/kg) challenge. Chemogenetic inhibition of dopaminergic projections to the accumbens did not affect choice in females, perhaps due to low levels of risky choice in Tg+ animals at baseline, but induced a switch from risky to optimal decision-making in males performing the cued rGT. This manipulation also decreased motor impulsivity but only in females. These data support the hypothesis that cue-driven risky choice is mediated, at least in males, by activity of accumbal dopaminergic neurons. However, motor impulsivity is more sensitive to inhibition of accumbal dopamine neurons in female rats. These data may help explain differences in the manifestation of addictions across gender and reinforce the importance of examining both sexes when seeking to attribute control of behavior to specific monoaminergic pathways. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Prioritizing Benefits: A Content Analysis of the Ethics in Dementia Technology Policies.

BACKGROUND: As the global prevalence of dementia rises, care costs impose a large burden on healthcare systems. Technology solutions in dementia care have the potential to ease this burden. While policies exist to guide and govern the use of dementia care technologies, little is known about how ethical considerations are incorporated into these documents. OBJECTIVE: The goal of this study was to examine ethics-related content in dementia care technology policies. METHODS: We used a two-step data mining approach to collect a sample of dementia technology policies. Policy documents were analyzed using emergent content analysis. Following the coding of the sample, thematic categories were organized using the principles of biomedical ethics as a framework. RESULTS: A total of 23 policy documents from four Alzheimer associations in four countries were included in our analysis. General ethics considerations and themes related to beneficence were mentioned in 96% of the documents. Thematic categories related to justice were present in 74% of the sample, themes related to non-maleficence appeared in 52% of documents, and themes related to autonomy appeared in 43% of the sample. CONCLUSION: While ethical considerations are present in existing policies for dementia care technology, these considerations revolve primarily around the benefit of the technologies. Further efforts are needed to provide formal guidance that incorporates both benefits and potential harms.

Availability, readability, and content of privacy policies and terms of agreements of mental health apps.

OBJECTIVE: To assess the availability, readability, and privacy-related content of the privacy policies and terms of agreement of mental health apps available through popular digital stores. MATERIALS AND METHODS: Popular smartphone app stores were searched using combinations of keywords "track" and "mood" and their synonyms. The first 100 apps from each search were evaluated for inclusion and exclusion criteria. Apps were assessed for availability of a privacy policy (PP) and terms of agreement (ToA) and if available, these documents were evaluated for both content and readability. RESULTS: Most of the apps collected in the sample did not include a PP or ToA. PPs could be accessed for 18% of iOS apps and 4% of Android apps; whereas ToAs were available for 15% of iOS and 3% of Android apps. Many PPs stated that users' information may be shared with third parties (71% iOS, 46% Android). DISCUSSION: Results demonstrate that information collection is occurring with the majority of apps that allow users to track the status of their mental health. Most of the apps collected in the initial sample did not include a PP or ToA despite this being a requirement by the store. The majority of PPs and ToAs that were evaluated are written at a post-secondary reading level and disclose that extensive data collection is occurring. CONCLUSION: Our findings raise concerns about consent, transparency, and data sharing associated with mental health apps and highlight the importance of improved regulation in the mobile app environment.

Patient perspectives of the experience of a computerized cognitive assessment in a clinical setting.

INTRODUCTION: Computerized assessments are becoming widely accepted in the clinical setting and as a potential outcome measure in clinical trials. To gain patient perspectives of this experience, the aim of the present study was to investigate patient attitudes and perceptions of the Cognigram [Cogstate], a computerized cognitive assessment. METHODS: Semi-structured interviews were conducted with 19 older adults undergoing a computerized cognitive assessment at the University of British Columbia Hospital Clinic for Alzheimer Disease and Related Disorders. Thematic analysis was applied to identify key themes and relationships within the data. RESULTS: The analysis resulted in three categories: attitudes toward computers in healthcare, the cognitive assessment process, and evaluation of the computerized assessment experience. The results show shared views on the need for balance between human and computer intervention, as well as room for improvement in test design and utility. DISCUSSION: Careful design and user-testing should be made a priority in the development of computerized assessment interfaces, as well as reevaluating the cognitive assessment process to minimize patient anxiety and discomfort. Future research should move toward continuous data capture within clinical trials and ensuring instruments of high reliability to reduce variance.

When Patient Engagement and Research Ethics Collide: Lessons from a Dementia Forum.

The importance of patient engagement in research has been gaining recognition since the turn of the 21st century. However, little is known about the perspectives of people with dementia on the process of discovery. To fill this gap and to inform priorities in patient engagement in the context of dementia research, the Clinic for Alzheimer Disease and Related Disorders at the University of British Columbia hosted an interactive session for members of the patient community and of the general public to share their views on various ethical aspects of the research process. Results from the session indicate that several current research ethics policies and norms in dementia research are not in line with participants' preferences. Here we discuss the importance of bridging the gap between researchers and patients and call for reforms in current standards of dementia research.

Health Advice in a Digital World: Quality and Content of Online Information about the Prevention of Alzheimer's Disease.

BACKGROUND: As the number of older adults turning to the Internet for health information increases, so does the potential for online information to have a substantial impact on the patient-physician relationship and on their health. Inaccurate information may weaken patient-physician relationships or result in increased physician visits and health anxiety, while high quality information may allow Internet users to make better decisions about their health. OBJECTIVE: To assess the quality and content of available online resources about the prevention of Alzheimer's disease (AD). METHODS: A sample of 308 articles related to the prevention of AD was collected from the first three pages of location-independent keyword searches on Google.com between September 17-30, 2014. Content analysis was applied to articles that met criteria (n = 298) and a quality evaluation tool was developed to generate a quality score for each of the articles (n = 290). RESULTS: We found that articles on the high end of the quality spectrum focused on modifiable risk factors and tended to present balanced information, while articles of low quality emphasized nutrition as a method of prevention and were more likely to be in conflict of interest. CONCLUSION: This study provides the first insight into the content and quality of prevention information for AD currently available online and highlights the importance of future research to better understand the impact of this information on the patient-physician relationship and health decision-making of older adults.