Incidental Findings Among Youth Participating in Multimodal Imaging Research: Characteristics of Findings and Description of a Management Approach.

Research imaging in healthy and clinical youth populations yields incidental findings that require a management strategy. Our primary objective was to document the frequency and nature of incidental findings within a research group integrating multiple imaging modalities. A second objective was to describe the evolution of an approach to handling incidental findings. A case example was included to display the intricacies of some of these scenarios. Youth, ages 13-20 years, with bipolar disorder, familial risk for bipolar disorder, or healthy controls, obtained one or a combination of neuroimaging, cardio-thoracic imaging, retinal imaging, and carotid imaging. All images were systematically reviewed for incidental findings. Overall, of 223 participants (n = 102 healthy controls), 59% (n = 131) had a brain magnetic resonance imaging (MRI) incidental finding and 27% (n = 60) had at least one incidental brain finding requiring non-urgent follow-up. In addition, of 109 participants with chest/cardiac MRI and carotid ultrasound, 3% (n = 3) had chest findings, 2% (n = 2) had cardiac findings, and 1% (n = 1) had a carotid finding. Of 165 youth with retinal imaging, 1% (n = 2) had incidental findings. While the vast majority of these incidental findings were of a non-serious, non-urgent nature, there were noteworthy exceptions. Imaging research groups need a system that emphasizes the value of clinical review of research images and one that is collaborative and responsive in order to inform follow-up plans. Rating systems that have been developed and used in neuroimaging for the classification of incidental findings can be adapted for use in areas other than the brain. Regardless of severity, incidental findings may raise anxiety in youth participants and their parents. The optimal threshold is one that balances transparency with utility.

Computer-Based Driving in Dementia Decision Tool With Mail Support: Cluster Randomized Controlled Trial.

BACKGROUND: Physicians often find significant challenges in assessing automobile driving in persons with mild cognitive impairment and mild dementia and deciding when to report to transportation administrators. Care must be taken to balance the safety of patients and other road users with potential negative effects of issuing such reports. OBJECTIVE: The aim of this study was to assess whether a computer-based Driving in Dementia Decision Tool (DD-DT) increased appropriate reporting of patients with mild dementia or mild cognitive impairment to transportation administrators. METHODS: The study used a parallel-group cluster nonblinded randomized controlled trial design to test a multifaceted knowledge translation intervention. The intervention included a computer-based decision support system activated by the physician-user, which provides a recommendation about whether to report patients with mild dementia or mild cognitive impairment to transportation administrators, based on an algorithm derived from earlier work. The intervention also included a mailed educational package and Web-based specialized reporting forms. Specialists and family physicians with expertise in dementia or care of the elderly were stratified by sex and randomized to either use the DD-DT or a control version of the tool that required identical data input as the intervention group, but instead generated a generic reminder about the reporting legislation in Ontario, Canada. The trial ran from September 9, 2014 to January 29, 2016, and the primary outcome was the number of reports made to the transportation administrators concordant with the algorithm. RESULTS: A total of 69 participating physicians were randomized, and 36 of these used the DD-DT; 20 of the 35 randomized to the intervention group used DD-DT with 114 patients, and 16 of the 34 randomized to the control group used it with 103 patients. The proportion of all assessed patients reported to the transportation administrators concordant with recommendation did not differ between the intervention and the control groups (50% vs 49%; Z=-0.19, P=.85). Two variables predicted algorithm-based reporting-caregiver concern (odds ratio [OR]=5.8, 95% CI 2.5-13.6, P<.001) and abnormal clock drawing (OR 6.1, 95% CI 3.1-11.8, P<.001). CONCLUSIONS: On the basis of this quantitative analysis, in-office abnormal clock drawing and expressions of concern about driving from caregivers substantially influenced physicians to report patients with mild dementia or mild cognitive impairment to transportation administrators, but the DD-DT tool itself did not increase such reports among these expert physicians. TRIAL REGISTRATION: ClinicalTrials.gov NCT02036099; https://clinicaltrials.gov/ct2/show/NCT02036099 (Archived by WebCite at http://www.webcitation.org/6zGMF1ky8).

Second Medical Opinions in End-of-Life Disputes in Critical Care: An Ethics-Based Approach.

Requests for a second medical opinion (SMO) by patients or substitute decision-makers (SDMs) can arise during end-of-life disputes in critical care. Such disagreements between patients or SDMs and physicians often pertain to specific elements of the decision-making process related to withholding or withdrawing of life-sustaining treatments. When these disputes occur in the critical care setting in Canada, practicalities and policy barriers prevent an SDM from obtaining an SMO without support from healthcare providers; moreover, in a majority of these cases the SDM will require the facilitation of a physician who is often the same individual with whom they are in conflict. Institutional and a national society's policy statements propose SMOs as an important component of a conflict resolution process for end-of-life disputes (Bosslet et al. 2015; Singer et al. 2001). However, these policies do not provide specific guidance to physicians on how to fairly consider SMO requests. Given the vulnerable position of patients and their SDMs in the critical care context and in order to promote fairness, physicians should apply consistent standards in deciding whether to facilitate a request for an SMO. To guide physicians' decision-making and inform future policy development, we propose three ethical principles for considering SDM requests for an SMO in critical care at the end of life.

Development of a decision-making tool for reporting drivers with mild dementia and mild cognitive impairment to transportation administrators.

BACKGROUND: Driving in persons with dementia poses risks that must be counterbalanced with the importance of the care for autonomy and mobility. Physicians often find substantial challenges in the assessment and reporting of driving safety for persons with dementia. This paper describes a driving in dementia decision tool (DD-DT) developed to aid physicians in deciding when to report older drivers with either mild dementia or mild cognitive impairment to local transportation administrators. METHODS: A multi-faceted, computerized decision support tool was developed, using a systematic literature and guideline review, expert opinion from an earlier Delphi study, as well as qualitative interviews and focus groups with physicians, caregivers of former drivers with dementia, and transportation administrators. The tool integrates inputs from the physician-user about the patient's clinical and driving history as well as cognitive findings, and it produces a recommendation for reporting to transportation administrators. This recommendation is translated into a customized reporting form for the transportation authority, if applicable, and additional resources are provided for the patient and caregiver. CONCLUSIONS: An innovative approach was needed to develop the DD-DT. The literature and guideline review confirmed the algorithm derived from the earlier Delphi study, and barriers identified in the qualitative research were incorporated into the design of the tool.

Use of multimedia in patient and caregiver education for cancer pain management: a literature review.

Pain is one of the most prominent symptoms faced by cancer patients. It is known that patient and caregiver-targeted educational interventions addressing the proper use of pain management may provide significant clinical value. This review examines the literature surrounding the use of multimedia interventions for patient and caregiver education (PCE) on pain management compared to traditional educational interventions. A literature search was conducted in Ovid MEDLINE (1946-July Week 2, 2016), Ovid Embase (1947-2016 Week 29), and Ovid Cochrane Central Register of Controlled Trials (up to June 2016). Paired reviewers conducted title and abstract screening and full-text screening to identify experimental, quasi-experimental and cohort studies evaluating one or more multimedia-based PCE interventions focused on cancer pain and pain management and targeting patients and/or caregivers. Findings were extracted by paired reviewers and synthesized qualitatively. Of the 68 full-text papers assessed, 7 were deemed relevant, of which 5 were RCTs and 2 were observational studies. We found limited but convincing quantitative data to suggest that the use of multimedia use in pain management education for patients/caregivers has greater value-added benefit compared to standard education. While there is evidence suggesting a positive effect on pain-related outcomes with the use of multimedia-based patient and caregiver-targeted interventions, it is limited to a small number of lower-quality studies. More robust and large-scale studies are needed to supplement existing evidence and provide more insight regarding the usability and user-friendliness of these tools in practice.

Protecting study participants in emergency research: is community consultation before trial commencement enough?

BACKGROUND: This article presents the results of a community consultation (CC) process completed in Toronto, Ontario, using a random digit dialling technique, on the attitudes and perceptions of the public toward the use of exception from informed consent when conducting emergency research involving the use of massive blood transfusions. METHODS: In 2012, our hospital conducted a CC, using a random digit dialling technique, to elicit the attitudes and perceptions of the public toward the use of an exemption from informed consent for an upcoming clinical trial. A total of 500 participants from high violent crime areas were interviewed as part of this consultation. RESULTS: The response rate for the telephone survey was 54%. Participants indicated a personal acceptance rate of 76%, acceptance of the justification for the exception to consent at 81%, thatthe study would meet the best interest of patients and the community at 81% and that youth (between 15 and 18 years) could be enrolled at 71%. When offered, no participant requested an opt-out wrist band to avoid being enrolled in this study. DISCUSSION: The use of violent crime neighborhoods to locate at risk communities was not effective in identifying the appropriate community of interest for this study. Though only representing a small subpopulation from a large Canadian city, the attitudes noted here is suggestive that Canadians may have a similar level of acceptance as the US based on published studies. However, given the resources needed to undertake this process and that in the end it did not elicit any useful feedback or recommendations for enhancing the safety of participants, the future use of phone surveys as a means of engaging communities should be reconsidered. LEVEL OF EVIDENCE LEVEL V: This is a retrospective subanalysis of a CC using a randomized phone dialling technique from a site prior to the start of the Pragmatic Randomized Optimal Platelet and Plasma Ratios Trial. The CC was not designed specifically for research purposes and as such reflect only a case study from a single center. TRIAL REGISTRATION NUMBER: Pre-result, NCT01545232.

A positive risk approach when clients choose to live at risk: a palliative case discussion.

PURPOSE OF REVIEW: The article discusses recent approaches in the literature about clients who chose to live at risk in their homes. It argues for a positive risk-based approach and a tool to help manage risk in the home, and applies these to a hypothetical end-of-life scenario. RECENT FINDINGS: Historically, safety plans to consider risk management involved a culture of risk aversion supported by sometimes paternalistic motives intended to protect vulnerable clients. New findings in the literature engage in a process that respects the ethical principles underlying harm reduction philosophies. The literature also argues for a perspective that moves away from viewing risk as only harmful, to one that supports a positive understanding of risk as part of a client's informed choice. SUMMARY: A risk support management plan, based on a positive approach, can provide a way to both support a client's choice to live at risk, anticipate for expected complications, and inform the creation of a contingency plan to address concerns as they may arise. The added value of a structured approach like the one proposed here for risk support management plans is that it provides adequate due diligence and informed decision-making when planning for risk-taking in complex situations.

A systematic literature review on the ethics of palliative sedation: an update (2016).

PURPOSE OF REVIEW: Palliative sedation has been the subject of intensive debate since its first appearance in 1990. In a 2010 review of palliative sedation, the following areas were identified as lacking in consensus: inconsistent terminology, its use in nonphysical suffering, the ongoing experience of distress, and concern that the practice of palliative sedation may hasten death. This review looks at the literature over the past 6 years and provides an update on these outstanding concerns. RECENT FINDINGS: Good clinical guidelines and policies are still required to address issues of emotional distress and waylay concerns that palliative sedation hastens death. SUMMARY: The empirical evidence suggests some movement toward consensus on the practice of palliative sedation. However, a continued need exists for evidence-informed practice guidelines, education, and research to support the ethical practice of palliative sedation at the end of life. Until that time, clinicians are advised to adopt a framework or guideline that has been expert driven to ensure consistent and ethical use of palliative sedation at the end of life.

Comparison of Goals of Care Between Hemodialysis Patients and Their Health Care Providers: A Survey.

BACKGROUND: Patient-centered care requires knowledge of patients' goals of care (GoC) on the part of health care providers (HCPs). Whether HCPs caring for in-center hemodialysis patients meet this criterion is uncertain. OBJECTIVE: We designed and conducted a GoC survey among patients and HCPs within a single in-center hemodialysis (ICHD) program to determine whether HCPs have an understanding of their patients' GoC. DESIGN: This was a prospective comparative quantitative survey study. SETTING: The study included a single Canadian maintenance ICHD center. PARTICIPANTS: These included hemodialysis patients and their primary nephrologists, nurses, social workers, pharmacists, and dietitians. METHODS AND MEASUREMENTS: Two surveys, one for patients and another for primary HCPs, were designed, piloted, and administered. For each participating patient, HCPs consisted of the primary nephrologist, nurse, social worker, pharmacist, and dietitian. Surveys included questions pertaining to 7 GoC themes. Patient-HCP agreement on the importance of each domain individually and the most important domain overall was assessed with kappa statistics. Factors influencing agreement were assessed with logistic regression in a secondary analysis. RESULTS: A total of 173 patients were invited to participate, of whom 137 (79%) completed surveys. Fifty HCPs completed 623 corresponding surveys: 132 by physicians, 112 by nurses, 126 by pharmacists, 127 by social workers, and 126 by dietitians. A total of 70.1% and 78.8% of patients agreed with the importance of and would feel comfortable having GoC discussions, respectively, with their HCPs; 42.7% of physicians reported not having provided prognostic information to the corresponding patient. Patient-HCP agreement regarding GoC was poor (all κ < .25, all P values > .05). In adjusted analyses, only patients choosing "Be Cured" as the most important GoC was significantly associated with poorer HCP-patient agreement than expected (odds ratio, 0.04; 95% confidence interval, 0.01-0.18). LIMITATIONS: This is a single-center study involving only ICHD patients. CONCLUSIONS: HCP perceptions of GoC did not agree with patients' reported GoC. This study suggests the need for the design and validation of interventions to improve HCPs' understanding of their patients' GoC.

MISE EN CONTEXTE: Pour offrir des soins qui sont axés sur les patients, il importe que les professionnels de la santé connaissent les objectifs de ceux-ci en ce qui concerne les soins qui leur seront prodigués. Quant à savoir si les soins prodigués par les professionnels de la santé aux patients pratiquant l'hémodialyse en centre hospitalier satisfont ce critère, la réponse est incertaine. OBJECTIFS DE L'ÉTUDE: Nous avons préparé et mené un sondage sur les objectifs en matière de soins auprès des patients et des professionnels de la santé au sein d'un programme d'hémodialyse en centre hospitalier pour déterminer si les fournisseurs de soins sont bien au fait des objectifs de soins de leurs patients. CADRE ET TYPE D'ÉTUDE: L'étude prospective, comparative et quantitative a été menée par sondage au sein d'une seule unité d'hémodialyse en centre hospitalier canadienne. PARTICIPANTS: Le bassin de répondants était constitué de patients sous hémodialyse et de leur néphrologue principal, ainsi que des infirmières, des travailleurs sociaux, des pharmaciens et des diététistes pratiquant dans l'unité d'hémodialyse concernée par l'étude et ayant de près ou de loin prodigué des soins à ces patients. MÉTHODOLOGIE: Deux versions d'un sondage, une première destinée aux patients et l'autre aux principaux fournisseurs de soins, ont été rédigées, pré-testées, et administrées. Nous avons sondé chaque patient, son néphrologue principal, son infirmière, son travailleur social, son pharmacien ainsi que son diététiste. Les sondages comportaient des questions relatives à sept thèmes reliés aux objectifs des patients en matière de soins. L'accord des patients et des fournisseurs de soins sur l'importance de chacun des thèmes ainsi que sur le thème qu'ils considéraient comme le plus important des sept ont été évalués par la méthode d'analyse statistique kappa. Les facteurs influençant l'entente patient-fournisseur de soins a fait l'objet d'une analyse secondaire par régression logistique. RÉSULTATS: Un total de 173 patients ont été invités à répondre au sondage, desquels 137 (79%) ont rempli le questionnaire. Les fournisseurs de soins, au nombre de 50, ont rempli un total de 623 questionnaires correspondants, soit 132 questionnaires remplis par les médecins, 112 par les infirmières, 126 par les pharmaciens, 127 par les travailleurs sociaux et 126 par les diététistes. Parmi les réponses fournies par les patients, 70.1% ont mentionné qu'il était important de discuter de leurs objectifs en matière de soins, et 78.8% se sont dits à l'aise avec l'idée d'avoir une telle discussion avec leurs fournisseurs de soins. Les médecin ont rapporté, dans une proportion de 42.7%, ne pas avoir communiqué les informations relatives au pronostic à leurs patients correspondants. L'accord patient-fournisseur de soins en regard des objectifs en matière de soins s'est avéré faible (toutes les valeurs d'analyses kappa à moins de 0.25 et toutes les valeurs de p à plus de 0.05). Dans les analyses ajustées, seuls les patients ayant choisi « être guéri ¼ comme objectif le plus important en matière de soins ont été associés de façon significative avec un accord plus faible que prévu entre les vues du patient et la perception de son fournisseur de soins (rapport de cotes: 0.04 ; IC 95 % entre 0.01 et 0.18). LIMITES DE L'ÉTUDE: Cette étude s'est effectuée au sein d'un seul centre de soin et n'implique que des patients sous hémodialyse traités en centre hospitalier. CONCLUSIONS: La perception des fournisseurs de soins en matière d'objectifs de soins des patients s'est avérée bien loin des préoccupations réelles de ceux-ci rapportées dans le questionnaire. Cette étude suggère que des mesures d'intervention validées devraient être mises en œuvre de façon à améliorer la compréhension des fournisseurs de soins envers les besoins et des objectifs de leurs patients en matière de soins.

Minding the gap: access to palliative care and the homeless.

BACKGROUND: With an ever increasing number of individuals living with chronic and terminal illnesses, palliative care as an emerging field is poised for unprecedented expansion. Today's rising recognition of its key role in patients' illnesses has led to increased interest in access to palliative care. It is known that homelessness as a social determinant of health has been associated with decreased access to health resources in spite of poorer health outcomes and some would argue, higher need. This article aims to discuss the current state of affairs with regards to accessing palliative care for the homeless in Canada. DISCUSSION: Recent review of the literature reveals differential access to palliative care services and outcomes with differing socio-economic status (SES). Notably, individuals of lower SES and in particular, those who are homeless have poorer health outcomes in addition to poor access to quality palliative care. Current palliative care services are ill equipped to care for this vulnerable population and most programs are built upon an infrastructure that is prohibitive for the homeless to access its services. A preliminary review of existing Canadian programs in place to address this gap in access identified a paucity of sporadic palliative care programs across the country with a focus on homeless and vulnerably-housed individuals. It is apparent that there is no unified national strategy to address this gap in access. The changing landscape of the Canadian population calls for an expansion of palliative care as a field and as many have put it, as a right. The right to access quality palliative and end of life care should not be confined to particular population groups. This article calls for the development of a unified national strategy to address this glaring gap in our healthcare provision and advocates for attention to and adoption of policy and processes that would support the homeless populations' right to quality palliative care.