Publications by authors named "Jessica Simon"

89 Publications

Oncology Clinicians' Challenges to Providing Palliative Cancer Care-A Theoretical Domains Framework, Pan-Cancer System Survey.

Curr Oncol 2021 Apr 9;28(2):1483-1494. Epub 2021 Apr 9.

Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4Z6, Canada.

Despite the known benefits, healthcare systems struggle to provide early, integrated palliative care (PC) for advanced cancer patients. Understanding the barriers to providing PC from the perspective of oncology clinicians is an important first step in improving care. A 33-item online survey was emailed to all oncology clinicians working with all cancer types in Alberta, Canada, from November 2017 to January 2018. Questions were informed by Michie's Theoretical Domains Framework and Behaviour Change Wheel (BCW) and queried (a) PC provision in oncology clinics, (b) specialist PC consultation referrals, and (c) working with PC consultants and home care. Respondents ( = 263) were nurses (41%), physicians (25%), and allied healthcare professionals (18%). Barriers most frequently identified were "clinicians' limited time/competing priorities" (64%), "patients' negative perceptions of PC" (63%), and clinicians' capability to manage patients' social issues (63%). These factors mapped to all three BCW domains: motivation, opportunity, and capability. In contrast, the least frequently identified barriers were clinician motivation and perceived PC benefits. Oncology clinicians' perceptions of barriers to early PC were comparable across tumour types and specialties but varied by professional role. The main challenges to early integrated PC include all three BCW domains. Notably, motivation is not a barrier for oncology clinicians; however, opportunity and capability barriers were identified. Multifaceted interventions using these findings have been developed, such as tip sheets to enhance capability, reframing PC with patients, and earlier specialist PC nursing access, to enhance clinicians' use of and patients' benefits from an early PC approach.
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http://dx.doi.org/10.3390/curroncol28020140DOI Listing
April 2021

Physical activity status and quality of life in patients with epilepsy - Survey from level four epilepsy monitoring units.

Epilepsy Res 2021 Apr 9;173:106639. Epub 2021 Apr 9.

Department of Neurology, University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd, TX, 75390, USA. Electronic address:

Purpose: People with epilepsy (PWE) tend to have sedentary lifestyles which may predispose them to a lower perceived quality of life (QOL). Moreover, the relationship between physical activity (PA) and QOL in populations of PWE with high disease burden has been under-studied. The goal of this study was to evaluate PA level and its impact on health-related QOL in PWE who were admitted to Level-4 epilepsy monitoring units (EMU).

Methods: In this prospective observational study, 200 patients from two EMUs in Dallas, Texas completed the following standard surveys: Rapid Assessment of Physical Activity (RAPA), the Quality of Life in Epilepsy (QOLIE-31), Patient Health Questionnaire-9 (PHQ-9), and Generalized Anxiety Disorder 7-item (GAD-7) questionnaire. Information on self-reported epilepsy history, severity of disease, and socioeconomic status were also collected. The diagnosis of epilepsy was confirmed by video-EEG monitoring.

Results: Among the 200 who completed the survey, 113 had a diagnosis of epilepsy and 109 of them completed the RAPA. Ninety-two (84 %) of these PWE reported a sedentary level of physical activity (RAPA < 6) and 16 % reported an active level (RAPA ≥ 6). Self-reported QOL was slightly higher in PWE with an active level of PA compared to PWE with a sedentary level of PA (63.8 ± 15.0 vs 53.7 ± 17.9, p = 0.07), even though there was no difference in the severity of self-reported mood symptoms. After controlling for employment and seizure frequency, physical activity level measured by RAPA score was also positively related to QOL (r = 0.39, p = 0.01) and negatively correlated with anxiety symptoms (r = -0.28, p = 0.02) and depression symptoms (r = -0.25, p = 0.04).

Conclusion: The majority of PWE in this survey reported sedentary lifestyles despite most of them being young to middle-aged adults. Higher PA level was associated with fewer self-reported mood symptoms and higher QOL. In conjunction with the literature, these results suggest that PWE with a wide range of disease burden should be encouraged to participate in regular exercise to potentially improve QOL.
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http://dx.doi.org/10.1016/j.eplepsyres.2021.106639DOI Listing
April 2021

Muslim perspectives on advance care planning: a model for community engagement.

Palliat Care Soc Pract 2021 27;15:2632352421997152. Epub 2021 Feb 27.

Tom Baker Cancer Centre, Division of Medical Oncology, Department of Oncology, University of Calgary, Calgary, AB T2N 4N2, Canada.

Background: Advance care planning is the process of communicating and documenting a person's future health care preferences. Despite its importance, knowledge of advance care planning is limited, especially among the Islamic community. In addition, little is known about how the Islamic community views advance care planning in the context of their religious and cultural beliefs.

Objectives: We aimed to increase knowledge of the importance of advance care planning, to improve health care provider and public knowledge, and to encourage dialogue between the community and health care providers.

Methods: We organized a community event and assembled a multi-disciplinary panel. Through a moderated discussion, the panel members offered their perspectives of advance care planning within a Muslim context.

Results: Approximately 100 individuals attended the event including community members, health care providers, medical students, and faith leaders. More than 90% of respondents rated the event as very good or excellent, found the session useful and were encouraged to reflect further on advance care planning.

Conclusion: This event was successful in raising awareness about advance care planning within the Islamic community as well as educating health care providers on Islamic views. This model of community and health care provider engagement may also be beneficial for other faith groups wishing to discuss advance care planning within their respective religious and cultural contexts.
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http://dx.doi.org/10.1177/2632352421997152DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7917835PMC
February 2021

Identification and operationalisation of indicators to monitor successful uptake of advance care planning policies: a modified Delphi study.

BMJ Support Palliat Care 2021 Feb 12. Epub 2021 Feb 12.

Department of Oncology, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada.

Background: In 2014, the province of Alberta, Canada implemented a province-wide policy and procedures for advance care planning (ACP) and goals of care designation (GCD) across its complex, integrated public healthcare system. This study was conducted to identify and operationalise performance indicators for ACP/GCD to monitor policy implementation success and sustainment of ACP/GCD practice change.

Methods: A systematic review and environmental scan was conducted to identify potential indicators of ACP/GCD uptake (n=132). A purposive sample of ACP/GCD stakeholders was invited to participate in a modified Delphi study to evaluate, reduce and refine these indicators through a combination of face-to-face meetings and online surveys.

Results: An evidence-informed Donabedian by Institute of Medicine (IOM) framework was adopted as an organising matrix for the indicators in an initial face-to-face meeting. Three online survey rounds reduced and refined the 132 indicators to 18. A final face-to-face meeting operationalised the indicators into a measurable format. Nine indicators, covering 11 of the 18 Donabedian×IOM domains, were operationalised.

Conclusions: Nine ACP/GCD evidence-informed indicators mapping to 11 of 18 Donabedian×IOM domains were endorsed, and have been operationalised into an online ACP/GCD dashboard. The indicators provide a characterisation of ACP/GCD uptake that could be generalised to other healthcare settings, measuring aspects related to ACP/GCD documentation, patient satisfaction and agreement between medical orders and care received. The final nine indicators reflect the stakeholders' expressed intent to strike a balance between comprehensiveness and feasibility within a large provincial healthcare system.
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http://dx.doi.org/10.1136/bmjspcare-2020-002780DOI Listing
February 2021

Phenotypically supervised single-cell sequencing parses within-cell-type heterogeneity.

iScience 2021 Jan 26;24(1):101991. Epub 2020 Dec 26.

Department of Bioengineering, University of California, San Diego, La Jolla, CA 92093, USA.

To better understand cellular communication driving diverse behaviors, we need to uncover the molecular mechanisms of within-cell-type functional heterogeneity. While single-cell RNA sequencing (scRNAseq) has advanced our understanding of cell heterogeneity, linking individual cell phenotypes to transcriptomic data remains challenging. Here, we used a phenotypic cell sorting technique to ask whether phenotypically supervised scRNAseq analysis (pheno-scRNAseq) can provide more insight into heterogeneous cell behaviors than unsupervised scRNAseq. Using a simple 3D breast cancer (BRCA) model, we conducted pheno-scRNAseq on invasive and non-invasive cells and compared the results to phenotype-agnostic scRNAseq analysis. Pheno-scRNAseq identified unique and more selective differentially expressed genes than unsupervised scRNAseq analysis. Functional studies validated the utility of pheno-scRNAseq in understanding within-cell-type functional heterogeneity and revealed that migration phenotypes were coordinated with specific metabolic, proliferation, stress, and immune phenotypes. This approach lends new insight into the molecular systems underlying BRCA cell phenotypic heterogeneity.
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http://dx.doi.org/10.1016/j.isci.2020.101991DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7808958PMC
January 2021

An Evolving Clinical Need: Discordant Oxygenation Measurements of Intubated COVID-19 Patients.

Ann Biomed Eng 2021 Mar 19;49(3):959-963. Epub 2021 Jan 19.

Office of the Dean, Renaissance School of Medicine, Stony Brook Medicine, Stony Brook, NY, USA.

Since the first appearance of the severe acute respiratory syndrome corona virus 2 (SARS-CoV-2) earlier this year, clinicians and researchers alike have been faced with dynamic, daily challenges of recognizing, understanding, and treating the coronavirus disease 2019 (COVID-19) due to SARS-CoV-2. Those who are moderately to severely ill with COVID-19 are likely to develop acute hypoxemic respiratory failure and require administration of supplemental oxygen. Assessing the need to initiate or titrate oxygen therapy is largely dependent on evaluating the patient's existing blood oxygenation status, either by direct arterial blood sampling or by transcutaneous arterial oxygen saturation monitoring, also referred to as pulse oximetry. While the sampling of arterial blood for measurement of dissolved gases provides a direct measurement, it is technically challenging to obtain, is painful to the patient, and can be time and resource intensive. Pulse oximetry allows for non-invasive, real-time, continuous monitoring of the percent of hemoglobin molecules that are saturated with oxygen, and usually closely predicts the arterial oxygen content. As such, it was particularly concerning when patients with severe COVID-19 requiring endotracheal intubation and mechanical ventilation within one of our intensive care units were observed to have significant discordance between their predicted arterial oxygen content via pulse oximetry and their actual measured oxygen content. We offer these preliminary observations along with our speculative causes as a timely, urgent clinical need. In the setting of a COVID-19 intensive care unit, entering a patient room to obtain a fresh arterial blood gas sample not only takes exponentially longer to do given the time required for donning and doffing of personal protective equipment (PPE), it involves the consumption of already sparce PPE, and it increases the risk of viral exposure to the nurse, physician, or respiratory therapist entering the room to obtain the sample. As such, technology similar to pulse oximetry which can be applied to a patients finger, and then continuously monitored from outside the room is essential in preventing a particularly dangerous situation of unrealized hypoxia in this critically-ill patient population. Additionally, it would appear that conventional two-wavelength pulse oximetry may not accurately predict the arterial oxygen content of blood in these patients. This discordance of oxygenation measurements poses a critical concern in the evaluation and management of the acute hypoxemic respiratory failure seen in patients with COVID-19.
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http://dx.doi.org/10.1007/s10439-020-02722-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7815279PMC
March 2021

Efficacy of Advance Care Planning Videos for Patients: A Randomized Controlled Trial in Cancer, Heart, and Kidney Failure Outpatient Settings.

Med Decis Making 2021 04 15;41(3):292-304. Epub 2021 Jan 15.

Department of Oncology, University of Alberta, Edmonton, AB, Canada.

Background: Patient videos about advance care planning (ACP; hereafter "Videos"), were developed to support uptake of provincial policy and address the complexity of patients' decision-making process. We evaluate self-administered ACP Videos, compare the studies' choice of outcomes, show correlations between the patients' ACP actions, and discuss implications for health care policy.

Objective: To test the efficacy of the Videos on patients' ACP/goals of care designation conversations with a health care provider.

Design, Setting, And Participants: Using a 2-arm, 1:1 randomized controlled trial, we recruited outpatients with a diagnosis of kidney failure, heart failure, metastatic lung, gastrointestinal, or gynecological cancer from 22 sites. Analysis followed the intention-to-treat principle.

Interventions: Videos describing the ACP process and illustrating the resuscitative, medical, and comfort levels of care.

Main Outcomes And Measures: The primary outcome was the proportion of participants who reported having an ACP/goals of care designation (GCD) conversation with a health care provider by 3 mo. Outcomes were measured using the Behaviours in Advance Care Planning and Actions Survey, an online survey capturing ACP attitudes, processes, and actions.

Results: We analyzed 241 and 217 participants at baseline and 3 mo, respectively. The proportion of participants who had an ACP/GCD conversation with a health care provider by 3 mo was significantly different between study arms (46% intervention; 32% control; adjusted odds ratio, 1.83; = 0.032). Adjusted for the quality of conversations, there was no significant difference.

Conclusions: Videos as stand-alone tools do not engage individuals in high-quality ACP. Pragmatic trials are necessary to evaluate their impact on downstream outcomes when integrated into intentional, comprehensive conversations with a health care provider. Considering the strong correlation between 2 activities (physicians discussing options, patients telling health care providers preferences), policy should focus on empowering patients to initiate these conversations.
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http://dx.doi.org/10.1177/0272989X20985836DOI Listing
April 2021

Real World Implementation of the Serious Illness Care Program in Cancer Care: Results of a Quality Improvement Initiative.

J Palliat Med 2021 Jan 12. Epub 2021 Jan 12.

Department of Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta, Canada.

Guidelines suggest that advance care planning (ACP) and goals-of-care discussions should be conducted for patients with advanced cancer early in the course of their disease. A recent audit of our health system found that these discussions were rarely being documented in the electronic medical record (EMR). We conducted a quality improvement initiative to improve rates of documentation of goals and wishes among patients with advanced cancer. On the basis of previous analyses of this problem, we determined that provider capability and opportunity were the main barriers to conducting and documenting serious illness conversations. We implemented the serious illness care program (SICP), a systematic multicomponent intervention that has shown potential for conducting and documenting ACP discussions in two oncology clinics. Our goal was to conduct at least 24 serious illness conversations over the implementation period, with documentation of at least 95% of all conversations. The SICP was implemented in two outpatient medical oncology clinics. A total of 15 serious illness care conversations occurred and 14 (93%) of these conversations were documented in the EMR. Total rates of documentation increased between the preimplementation and implementation period (4.2%-5.4% for clinician A and 0%-7.3% for clinician B). Implementation of the SICP resulted in increased rates of documentation, but the target number of conversations was not met. Further improvement cycles are required to address barriers to conducting and documenting routine serious illness conversations.
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http://dx.doi.org/10.1089/jpm.2020.0680DOI Listing
January 2021

Auditory localization should be considered as a sign of minimally conscious state based on multimodal findings.

Brain Commun 2020 12;2(2):fcaa195. Epub 2020 Dec 12.

Coma Science Group, GIGA-Consciousness, University of Liège, 4000 Liège, Belgium.

Auditory localization (i.e. turning the head and/or the eyes towards an auditory stimulus) is often part of the clinical evaluation of patients recovering from coma. The objective of this study is to determine whether auditory localization could be considered as a new sign of minimally conscious state, using a multimodal approach. The presence of auditory localization and the clinical outcome at 2 years of follow-up were evaluated in 186 patients with severe brain injury, including 64 with unresponsive wakefulness syndrome, 28 in minimally conscious state minus, 71 in minimally conscious state plus and 23 who emerged from the minimally conscious state. Brain metabolism, functional connectivity and graph theory measures were investigated by means of F-fluorodeoxyglucose positron emission tomography, functional MRI and high-density electroencephalography in two subgroups of unresponsive patients, with and without auditory localization. These two subgroups were also compared to a subgroup of patients in minimally conscious state minus. Auditory localization was observed in 13% of unresponsive patients, 46% of patients in minimally conscious state minus, 62% of patients in minimally conscious state plus and 78% of patients who emerged from the minimally conscious state. The probability to observe an auditory localization increased along with the level of consciousness, and the presence of auditory localization could predict the level of consciousness. Patients with auditory localization had higher survival rates (at 2-year follow-up) than those without localization. Differences in brain function were found between unresponsive patients with and without auditory localization. Higher connectivity in unresponsive patients with auditory localization was measured between the fronto-parietal network and secondary visual areas, and in the alpha band electroencephalography network. Moreover, patients in minimally conscious state minus significantly differed from unresponsive patients without auditory localization in terms of brain metabolism and alpha network centrality, whereas no difference was found with unresponsive patients who presented auditory localization. Our multimodal findings suggest differences in brain function between unresponsive patients with and without auditory localization, which support our hypothesis that auditory localization should be considered as a new sign of minimally conscious state. Unresponsive patients showing auditory localization should therefore no longer be considered unresponsive but minimally conscious. This would have crucial consequences on these patients' lives as it would directly impact the therapeutic orientation or end-of-life decisions usually taken based on the diagnosis.
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http://dx.doi.org/10.1093/braincomms/fcaa195DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7784043PMC
December 2020

Multiparameter quantitative histological MRI values in high-grade gliomas: a potential biomarker of tumor progression.

Neurooncol Pract 2020 Dec 15;7(6):646-655. Epub 2020 Aug 15.

GIGA Cyclotron Research Centre-In Vivo Imaging, University of Liège, Liège, Belgium.

Background: Conventional MRI poorly distinguishes brain parenchyma microscopically invaded by high-grade gliomas (HGGs) from the normal brain. By contrast, quantitative histological MRI (hMRI) measures brain microstructure in terms of physical MR parameters influenced by histochemical tissue composition. We aimed to determine the relationship between hMRI parameters in the area surrounding the surgical cavity and the presence of HGG recurrence.

Methods: Patients were scanned after surgery with an hMRI multiparameter protocol that allowed for estimations of longitudinal relaxation rate (R1) = 1/T1, effective transverse relaxation rate (R2)*=1/T2*, magnetization transfer saturation (MT), and proton density. The initial perioperative zone (IPZ) was segmented on the postoperative MRI. Once recurrence appeared on conventional MRI, the area of relapsing disease was delineated (extension zone, EZ). Conventional MRI showing recurrence and hMRI were coregistered, allowing for the extraction of parameters R1, R2*, MT, and PD in 3 areas: the overlap area between the IPZ and EZ (OZ), the peritumoral brain zone, PBZ (PBZ = IPZ - OZ), and the area of recurrence (RZ = EZ - OZ).

Results: Thirty-one patients with HGG who underwent gross-total resection were enrolled. MT and R1 were the most strongly associated with tumor progression. MT was significantly lower in the OZ and RZ, compared to PBZ. R1 was significantly lower in RZ compared to PBZ. PD was significantly higher in OZ compared to PBZ, and R2* was higher in OZ compared to PBZ or RZ. These changes were detected 4 to 120 weeks before recurrence recognition on conventional MRI.

Conclusions: HGG recurrence was associated with hMRI parameters' variation after initial surgery, weeks to months before overt recurrence.
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http://dx.doi.org/10.1093/nop/npaa047DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7716186PMC
December 2020

The Near-Death Experience Content (NDE-C) scale: Development and psychometric validation.

Conscious Cogn 2020 11 20;86:103049. Epub 2020 Nov 20.

Coma Science Group, GIGA-Consciousness, University of Liège, Avenue de l'hôpital, 11, 4000 Liège, Belgium; Centre du Cerveau(2), University Hospital of Liège, Avenue de l'hôpital, 11, 4000 Liège, Belgium.

As interest grows in near-death experiences (NDEs), it is increasingly important to accurately identify them to facilitate empirical research and reproducibility among assessors. We aimed (1) to reassess the psychometric properties of the NDE scale developed by Greyson (1983) and (2) to validate the Near-Death Experience Content (NDE-C) scale that quantifies NDEs in a more complete way. Internal consistency, construct and concurrent validity analyses were performed on the NDE scale. Based on those results and the most recent empirical evidence, we then developed a new 20-item scale. Internal consistency, explanatory and confirmatory factor, concurrent and discriminant validity analyses were conducted. Results revealed (1) a series of weaknesses in the NDE scale, (2) a 5-factor structure covering relevant dimensions and the very good psychometric properties of the NDE-C scale, including very good internal consistency (Cronbach α = 0.85) and concurrent validity (correlations above 0.76). This new reliable scale should facilitate future research.
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http://dx.doi.org/10.1016/j.concog.2020.103049DOI Listing
November 2020

Patient and caregiver experiences with advanced cancer care: a qualitative study informing the development of an early palliative care pathway.

BMJ Support Palliat Care 2020 Oct 19. Epub 2020 Oct 19.

Community Health Sciences, University of Calgary, Calgary, Alberta, Canada.

Background: Palliative care is an approach that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In order to effectively deliver palliative care, patient and caregiver priorities need to be incorporated in advanced cancer care.

Aim: This study identified experiences of patients living with advanced colorectal cancer and their caregivers to inform the development of an early palliative care pathway.

Design: Qualitative patient-oriented study.

Settings/participants: Patients receiving care at two cancer centres were interviewed using semistructured telephone interviews to explore their experiences with cancer care services received prior to a new developed pathway. Interviews were transcribed verbatim, and the data were thematically analysed.

Results: From our study, we identified gaps in advanced cancer care that would benefit from an early palliative approach to care. 15 patients and 7 caregivers from Edmonton and Calgary were interviewed over the phone. Participants identified the following gaps in advanced cancer care: poor communication of diagnosis, lack of communication between healthcare providers, role and involvement of the family physician, lack of understanding of palliative care and advance care planning.

Conclusions: Early palliative approaches to care should consider consistent and routine delivery of palliative care information, collaborations among different disciplines such as oncology, primary care and palliative care, and engagement of patients and family caregivers in the development of care pathways.
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http://dx.doi.org/10.1136/bmjspcare-2020-002578DOI Listing
October 2020

Posttraumatic Stress Disorder Is Associated with α Dysrhythmia across the Visual Cortex and the Default Mode Network.

eNeuro 2020 Jul/Aug;7(4). Epub 2020 Jul 31.

Department of Psychology, Florida State University, Tallahassee, FL 32304

Anomalies in default mode network (DMN) activity and α (8-12 Hz) oscillations have been independently observed in posttraumatic stress disorder (PTSD). Recent spatiotemporal analyses suggest that α oscillations support DMN functioning via interregional synchronization and sensory cortical inhibition. Therefore, we examined a unifying pathology of α deficits in the visual-cortex-DMN system in PTSD. Human patients with PTSD (=25) and two control groups, patients with generalized anxiety disorder (GAD; =24) and healthy controls (HCs; =20), underwent a standard eyes-open resting state (S-RS) and a modified resting state (M-RS) of passively viewing salient images (known to deactivate the DMN). High-density electroencephalogram (hdEEG) were recorded, from which intracortical α activity (power and connectivity/Granger causality) was extracted using the exact low-resolution electromagnetic tomography (eLORETA). Patients with PTSD (vs GAD/HC) demonstrated attenuated α power in the visual cortex (VC) and key hubs of the DMN [posterior cingulate cortex (PCC) and medial prefrontal cortex (mPFC)] at both states, the severity of which further correlated with hypervigilance symptoms. With increased visual input (at M-RS vs S-RS), patients with PTSD further demonstrated reduced α-frequency directed connectivity within the DMN (PCC→mPFC) and, importantly, from the VC to both DMN hubs (VC→PCC and VC→mPFC), linking α deficits in the two systems. These interrelated α deficits align with DMN hypoactivity/hypoconnectivity, sensory disinhibition, and hypervigilance in PTSD, representing a unifying neural underpinning of these anomalies. The identification of visual-cortex-DMN α dysrhythmia in PTSD further presents a novel therapeutic target, promoting network-based intervention of neural oscillations.
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http://dx.doi.org/10.1523/ENEURO.0053-20.2020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7405069PMC
July 2020

Listening to Patients' Own Goals: A Key to Goals of Care Decisions in Cardiac Care.

Can J Cardiol 2020 Jul 26;36(7):1135-1138. Epub 2020 Apr 26.

Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada; Department of Palliative Care, University of Calgary, Calgary, Alberta, Canada.

Cardiology spans the spectrum of patient care from the stable outpatient to acute preterminal inpatient. This article provides a narrative account of challenges, learnings, and experiences that we have used as a means to reflect on our own goals of care (GOC) conversations. We detail experiential and evidence-based insights on identifying and overcoming common GOC discussion barriers and building frameworks for effectively addressing patient interests and values through the course of medical care. Existing practices around advance care planning result in GOC discussions being postponed in favour of task-focused medical care and physicians avoiding these discussions out of a perceived lack of time. Physicians struggle to be flexible with existing care plans and in an effort to respect patient autonomy sometimes inappropriately relegate care decisions solely onto patients and families. Instead, we suggest conceiving of the GOC process as involving multiple conversations, taking time to get to know a patient and their personal priorities, sharing a patient's expected medical course when having GOC discussions, admitting prognostic uncertainty when it exists, giving patients and families the space to adjust to these discussions and remaining flexible with plans as a patient's health course fluctuates. Furthermore, our approach stresses being decisive and proactive in providing GOC recommendations when properly equipped to do so and enables recognition and recourse for patient-physician goal misalignment. In conclusion, we stress the importance of advising a treatment course that is responsive to patient considerations via practical communication strategies.
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http://dx.doi.org/10.1016/j.cjca.2020.04.020DOI Listing
July 2020

Familiarity for entities as a sensitive marker of antero-lateral entorhinal atrophy in amnestic mild cognitive impairment.

Cortex 2020 07 18;128:61-72. Epub 2020 Mar 18.

GIGA-Cyclotron Research Center In vivo Imaging, University of Liège, Liège, Belgium; Psychology and Neuroscience of Cognition Research Unit, University of Liège, Liège, Belgium.

Alzheimer's disease (AD) symptomatology typically starts with memory deficits. Neurofibrillary tangles - one of the neuropathological hallmarks of AD - first affect the transentorhinal cortex (i.e., Brodmann's area 35 - BA35 and antero-lateral entorhinal cortex), a subregion of the antero-lateral parahippocampal region (also comprising BA36) currently hypothesized to serve as a functional hub representing entities. Here, we tested this hypothesis by investigating whether atrophy of antero-lateral parahippocampal subregions affects memory for entities. Patients with amnestic mild cognitive impairment (aMCI; known to be at high-risk of AD and to present with variable antero-lateral parahippocampal atrophy; N = 17) and healthy older control participants (N = 17) underwent a high-resolution MRI scan of the antero-lateral parahippocampal subregions and a visual object familiarity task, critically including three conditions with increasing need for entity-level representation: (1) letting all fluency cues contribute to familiarity, (2) precluding conceptual fluency, and (3) also precluding perceptual fluency, thereby directly tapping familiarity for entities. In aMCI, right antero-lateral entorhinal cortex specifically contributed to familiarity for entities, an association that was stronger than with familiarity in the 'discriminative' condition (2) (also precluding conceptual fluency, but tested in a viewpoint-dependent fashion as traditionally). In contrast, right BA36 specifically contributed to familiarity in the discriminative condition, an association that appeared marginally stronger than with familiarity for entities. These results shed new light on the functional hierarchy that may exist within the antero-lateral parahippocampal hub. Importantly, familiarity requiring an entity-level representation may specifically target transentorhinal integrity, opening a promising avenue to develop the still-lacking clinical marker of AD-related initial decline.
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http://dx.doi.org/10.1016/j.cortex.2020.02.022DOI Listing
July 2020

Alcohol Craving in Heavy and Occasional Alcohol Drinkers After Cue Exposure in a Virtual Environment: The Role of the Sense of Presence.

Front Hum Neurosci 2020 31;14:124. Epub 2020 Mar 31.

Psychology and Neuroscience of Cognition-PsyNCogn, University of Liège, Liège, Belgium.

The development of new technologies, and more specifically the opportunity to immerse participants in virtual controlled environments, provides a new ecological framework for researchers to study complex behaviors. This experiment aimed to compare post-immersion craving in occasional and heavy alcohol drinkers. Twenty-two occasional drinkers and eighteen heavy drinkers were recruited and immersed in a virtual bar, including alcoholic beverages. After the exposure, heavy drinkers reported a significantly higher craving than occasional drinkers. Post-immersion alcohol craving was significantly related to the levels of perceived ecological validity of the virtual environment. Finally, a moderation analysis suggested that the levels of craving more strongly increased with perceived ecological validity in heavy drinkers than in occasional drinkers. Therefore, the perceived ecological validity was an important experimental parameter to study craving in a virtual environment. These results further suggested that virtual reality might be a useful tool for both the scientific study of alcohol addiction and the treatment of alcohol dependence and relapse.
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http://dx.doi.org/10.3389/fnhum.2020.00124DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7136534PMC
March 2020

Influence of clinical context on interpretation and use of an advance care planning policy: a qualitative study.

CMAJ Open 2020 Jan-Mar;8(1):E9-E15. Epub 2020 Jan 7.

Cumming School of Medicine (Shaw, Grant), University of Calgary; Community Health Sciences (Holroyd-Leduc, Simon), University of Calgary; Faculty of Nursing (Raffin Bouchal, Hutchison, Booker, White), University of Calgary, Calgary, Alta.

Background: Advance care planning is a process through which people share their values, goals and preferences regarding future medical treatments with the purpose of aligning care received with patient wishes. The objective of this study was to explore perspectives from patients and clinicians in 4 clinical settings to understand how context influences interpretation and application of advance care planning processes.

Methods: This study used a qualitative interpretive descriptive design. Patient and clinician participants were recruited across 4 clinical outpatient settings (cancer, heart failure, renal failure and supportive living) in Calgary and Edmonton. Data were collected between 2014 and 2015 by means of recorded one-on-one semistructured interviews. We analyzed the data using thematic analysis in 2016-2017.

Results: Thirty-four patients and 34 clinicians participated in interviews. Themes common to all 4 contexts were lack of shared understanding between patients and clinicians, and a lack of consistent clinical process related to advance care planning. Advance care planning understanding and process varied substantially between contexts. This variation seemed to be driven by differences in perceptions around disease burden and the nature of the physician-patient relationship.

Interpretation: Provision of a system-wide policy and procedural framework alone was not found to be sufficient to form a standardized approach to advance care planning, as considerable variability existed in advance care planning process between and within clinical settings. Quality-improvement methods that consider local processes, gaps and barriers can help in developing a consistent, comprehensive process.
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http://dx.doi.org/10.9778/cmajo.20190100DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6951450PMC
February 2021

Interactions with the integrative memory model.

Behav Brain Sci 2020 01 3;42:e304. Epub 2020 Jan 3.

GIGA-Cyclotron Research Centre In Vivo Imaging & Psychology and Neuroscience of Cognition, University of Liège, 4000Liège,

The integrative memory model formalizes a new conceptualization of memory in which interactions between representations and cognitive operations within large-scale cerebral networks generate subjective memory feelings. Such interactions allow to explain the complexity of memory expressions, such as the existence of multiples sources for familiarity and recollection feelings and the fact that expectations determine how one recognizes previously encountered information.
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http://dx.doi.org/10.1017/S0140525X19002024DOI Listing
January 2020

Impaired early visual categorization of fear in social anxiety.

Psychophysiology 2020 03 1;57(3):e13509. Epub 2019 Dec 1.

Department of Psychology, Florida State University, Tallahassee, Florida.

Social anxiety is associated with biased social perception, especially of ambiguous cues. While aberrations in high-level processes (e.g., cognitive appraisal and interpretation) have been implicated in such biases, contributions of early, low-level stimulus processing remain unclear. Categorical perception represents an efficient process to resolve signal ambiguity, and categorical emotion perception can swiftly classify sensory input, "tagging" biologically important stimuli at early stages of processing to facilitate ecological response. However, early threat categorization could be disrupted by exaggerated (or disinhibited) threat processing in anxiety, resulting in biased perception of ambiguous signals. We tested this hypothesis among individuals with low and high trait social anxiety (LSA/HSA; defined relative to the current sample), who performed a two-alternative forced-choice (fear or neutral) task on facial expressions parametrically varied along a neutral-fear continuum. The groups diverged in the reaction time (RT) profile along the neutral-fear continuum, which was characteristic of categorical perception in the LSA (vs. HSA) group with drastically increased RT from neutral to intermediate (boundary) fear intensities, contrasting monotonic, nonsignificant RT changes in the HSA group. Neurometric analysis along the continuum identified an early neutral-fear categorization operation (arising in the P1, an early visual ERP at 100 ms), which was nonetheless impaired in the HSA group (due to disinhibited response at the neutral-fear boundary). Absent group differences in higher-level cognitive operations (identified by later ERPs), current findings highlight a dispositional cognitive vulnerability in early visual categorization of social threat, which could precipitate further cognitive aberrations and, eventually, the onset of social anxiety disorder.
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http://dx.doi.org/10.1111/psyp.13509DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7018552PMC
March 2020

Surgical boot camp for fourth-year medical students: Impact on objective skills and subjective confidence.

Surgery 2020 02 16;167(2):298-301. Epub 2019 Aug 16.

Department of Surgery, Stony Brook University, NY.

Background: Within surgical education, there has been a recent emphasis on preparing medical students for the rigors of residency in an effort to improve confidence and technical preparedness throughout postgraduate training. The aim of this study is to test the impact of a boot camp course using the American College of Surgeons-based curriculum and objective, observer-based rating tools on both subjective confidence and objective skills of fourth-year medical students.

Materials And Methods: Informed consent was obtained on the first day of the boot camp. Before any teaching, students performed 5 tasks (patient handoff, suturing, knot tying, central line placement, and chest tube placement), which were scored using objective rating tools provided by the American College of Surgeons. Students also completed 2 confidence measures. After 2 weeks of dedicated teaching and review, students were scored on the 5 same tasks and repeated the confidence measures.

Results: Fourth-year medical students (N = 12) who had matched into surgical subspecialties were invited to participate in a 2-week surgical boot camp. All students beginning the study completed the study. The average age was 26.7 years; 25% of students were female. Subspecialties represented included general surgery (n = 5), orthopedics (n = 3), integrated plastics (n = 2), urology (n = 1), and neurosurgery (n = 1). Scores on objective skills improved significantly in all 5 tasks measured. Confidence improved significantly on individual task items, while overall self-efficacy remained unchanged.

Conclusions: Implementation of a 2-week, multimodal surgical boot camp improved student performance on objectively rated surgical skills and increased student confidence.
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http://dx.doi.org/10.1016/j.surg.2019.06.041DOI Listing
February 2020

Multiparameter MRI quantification of microstructural tissue alterations in multiple sclerosis.

Neuroimage Clin 2019 29;23:101879. Epub 2019 May 29.

GIGA - CRC in vivo Imaging, University of Liège, Liège, Belgium; Clinical Neuroimmunology Unit, Neurology Department, CHU Liège, Belgium.

Objectives: Conventional MRI is not sensitive to many pathological processes underpinning multiple sclerosis (MS) ongoing in normal appearing brain tissue (NABT). Quantitative MRI (qMRI) and a multiparameter mapping (MPM) protocol are used to simultaneously quantify magnetization transfer (MT) saturation, transverse relaxation rate R2* (1/T2*) and longitudinal relaxation rate R1 (1/T1), and assess differences in NABT microstructure between MS patients and healthy controls (HC).

Methods: This prospective cross-sectional study involves 36 MS patients (21 females, 15 males; age range 22-63 years; 15 relapsing-remitting MS - RRMS; 21 primary or secondary progressive MS - PMS) and 36 age-matched HC (20 females, 16 males); age range 21-61 years). The qMRI maps are computed and segmented in lesions and 3 normal appearing cerebral tissue classes: normal appearing cortical grey matter (NACGM), normal appearing deep grey matter (NADGM), normal appearing white matter (NAWM). Individual median values are extracted for each tissue class and MR parameter. MANOVAs and stepwise regressions assess differences between patients and HC.

Results: MS patients are characterized by a decrease in MT, R2* and R1 within NACGM (p < .0001) and NAWM (p < .0001). In NADGM, MT decreases (p < .0001) but R2* and R1 remain normal. These observations tend to be more pronounced in PMS. Quantitative MRI parameters are independent predictors of clinical status: EDSS is significantly related to R1 in NACGM and R2* in NADGM; the latter also predicts motor score. Cognitive score is best predicted by MT parameter within lesions.

Conclusions: Multiparametric data of brain microstructure concord with the literature, predict clinical performance and suggest a diffuse reduction in myelin and/or iron content within NABT of MS patients.
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http://dx.doi.org/10.1016/j.nicl.2019.101879DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6555891PMC
June 2020

How to increase public participation in advance care planning: findings from a World Café to elicit community group perspectives.

BMC Public Health 2019 Jun 3;19(1):679. Epub 2019 Jun 3.

Advance Care Planning Collaborative Research and Innovation Opportunities Program (ACP CRIO), University of Calgary, Calgary, Alberta, Canada.

Background: In 2014, Alberta, Canada broke new ground in having the first provincial healthcare policy and procedure for advance care planning (ACP), the process of communicating and documenting a person's future healthcare preferences. However, to date public participation and awareness of ACP remains limited. The aim of this initiative was to elicit community group perspectives on how to help people learn about and participate in ACP.

Methods: Targeted invitations were sent to over 300 community groups in Alberta (e.g. health/disease, seniors/retirement, social/service, legal, faith-based, funeral planning, financial, and others). Sixty-seven participants from 47 community groups attended a "World Café". Participants moved between tables at fixed time intervals, and in small groups discussed three separate ACP-related questions. Written comments were captured by participants and facilitators. Each comment was coded according to Michie et al.'s Theoretical Domains Framework, and mapped to the Capability, Opportunity and Motivation behavior change system (COM-B) in order to identify candidate intervention strategies.

Results: Of 800 written comments, 76% mapped to the Opportunity: Physical COM-B component of behavior, reflecting a need for access to ACP resources. The most common intervention functions identified pertained to Education, Environmental Restructuring, Training, and Enablement. We synthesized the intervention functions and qualitative comments into eight recommendations for engaging people in ACP. These pertain to access to informational resources, group education and facilitation, health system processes, use of stories, marketing, integration into life events, inclusion of business partners, and harmonization of terminology.

Conclusions: There was broad support for the role of community groups in promoting ACP. Eight recommendations for engaging the public in ACP were generated and have been shared with stakeholders.
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http://dx.doi.org/10.1186/s12889-019-7034-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6547442PMC
June 2019

Short Graphic Values History Tool for decision making during serious illness.

BMJ Support Palliat Care 2019 Feb 6. Epub 2019 Feb 6.

Department of Critical Care Medicine, Queen's University, Kingston, Ontario, Canada.

Objectives: To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness.

Methods: The development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before-after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1-2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one's values.

Results: In the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (-6.7 points, 95% CI -11.1 to -2.3, p=0.003; 0-100 scale; N=100), with the most improvement seen in the values clarity subscale (-10.0 points, 95% CI -17.3 to -2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1-5 scale; N=61).

Conclusions: The Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.
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http://dx.doi.org/10.1136/bmjspcare-2018-001698DOI Listing
February 2019

An integrative memory model of recollection and familiarity to understand memory deficits.

Behav Brain Sci 2019 02 5;42:e281. Epub 2019 Feb 5.

GIGA-Cyclotron Research Centre In Vivo Imaging & Psychology and Neuroscience of Cognition Research Unit, University of Liège, 4000Liège, Belgium.

Humans can recollect past events in details (recollection) and/or know that an object, person, or place has been encountered before (familiarity). During the last two decades, there has been intense debate about how recollection and familiarity are organized in the brain. Here, we propose an integrative memory model which describes the distributed and interactive neurocognitive architecture of representations and operations underlying recollection and familiarity. In this architecture, the subjective experience of recollection and familiarity arises from the interaction between core systems (storing particular kinds of representations shaped by specific computational mechanisms) and an attribution system. By integrating principles from current theoretical views about memory functioning, we provide a testable framework to refine the prediction of deficient versus preserved mechanisms in memory-impaired populations. The case of Alzheimer's disease (AD) is considered as an example because it entails progressive lesions starting with limited damage to core systems before invading step-by-step most parts of the model-related network. We suggest a chronological scheme of cognitive impairments along the course of AD, where the inaugurating deficit would relate early neurodegeneration of the perirhinal/anterolateral entorhinal cortex to impaired familiarity for items that need to be discriminated as viewpoint-invariant conjunctive entities. The integrative memory model can guide future neuropsychological and neuroimaging studies aiming to understand how such a network allows humans to remember past events, to project into the future, and possibly also to share experiences.
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http://dx.doi.org/10.1017/S0140525X19000621DOI Listing
February 2019

Human chemosignals of disgust facilitate food judgment.

Sci Rep 2018 11 19;8(1):17006. Epub 2018 Nov 19.

Department of Psychology, Florida State University, Tallahassee, FL, USA.

Choosing food is not a trivial decision that people need to make daily, which is often subject to social influences. Here, we studied a human homolog of social transmission of food preference (STFP) as observed in rodents and other animals via chemosignals of body secretions. Human social chemosignals (sweat) produced during a disgust or neutral state among a group of donors were presented to participants undergoing a 2-alternative-forced-choice food healthiness judgment task during functional magnetic resonance imaging (fMRI). Response speed and two key signal detection indices-d' (discrimination sensitivity) and β (response bias)-converged to indicate that social chemosignals of disgust facilitated food healthiness decisions, in contrast to primary disgust elicitors (disgust odors) that impaired the judgment. fMRI analyses (disgust vs. neutral sweat) revealed that the fusiform face area (FFA), amygdala, and orbitofrontal cortex (OFC) were engaged in processing social chemosignals of disgust during food judgment. Importantly, a double contrast of social signaling across modalities (olfactory vs. visual-facial expressions) indicated that the FFA and OFC exhibited preferential response to social chemosignals of disgust. Together, our findings provide initial evidence for human STFP, where social chemosignals are incorporated into food decisions by engaging social and emotional areas of the brain.
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http://dx.doi.org/10.1038/s41598-018-35132-wDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6242886PMC
November 2018

Older patient engagement in advance care planning in Canadian primary care practices: Results of a multisite survey.

Can Fam Physician 2018 05;64(5):371-377

Professor in the Department of Critical Care Medicine and the Department of Public Health Sciences at Queen's University in Kingston, Ont, and Director of the Clinical Evaluation Research Unit at Kingston General Hospital.

Objective: To assess primary care patients' engagement in advance care planning (ACP) and predictors of engagement.

Design: Cross-sectional survey using a revised version of a validated questionnaire.

Setting: Alberta, Ontario, and British Columbia.

Participants: Convenience sample of 20 family practices that provided a consecutive sample of 810 patients aged 50 years and older.

Main Outcome Measures: Engagement in ACP activities, and sociodemographic and health-related predictors of having engaged in ACP activities.

Results: Patients had a mean age of 66 years (55.6% women). Two-thirds of patients (68.5%; 555) had thought about the kinds of medical treatments they would want or not want if they were sick and in hospital, 52.8% (n = 428) had talked with someone about what they would want, 32.0% (n = 259) had written down their wishes, 50.4% (n = 408) had named someone to be their substitute decision maker, and 23.0% (n = 186) had engaged in all 4 key ACP activities. Of those patients who had talked to someone about medical treatments wanted or not, 17.5% (n = 75) had talked to their family doctors. Age (adjusted odds ratio per 10-year category of 1.55; 95% CI 1.26 to 1.90; < .001) was significantly associated with having engaged in all ACP activities.

Conclusion: Many patients have engaged in some ACP activities, but few have discussed ACP with their family physicians. Strategies should be implemented in primary care to reduce the barriers to discussing ACP.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5951655PMC
May 2018

Perspectives on advance care planning in haematopoietic stem cell transplantation: a qualitative study.

Int J Palliat Nurs 2018 03;24(3):132-144

Associate Dean (Graduate Programmes), Associate Professor, Faculty of Nursing, University of Calgary, Alberta.

Background: Advance care planning (ACP) engagement and completion of advance directives remain low in patients undergoing haematopoietic stem cell transplantation, despite the high risk of treatment-related mortality.

Aim: To understand the barriers to and facilitators of ACP in haematopoietic stem cell transplantation.

Methods: This qualitative study used interpretive description methodology. The researchers conducted audio-recorded semi-structured interviews with participants. The constant comparative method was used to analyse data.

Results: A total of six patients, five family members and eight clinicians participated in the study. Perceived barriers to ACP included: lack of time, lack of process, lack of understanding of disease/treatment and ACP, need to keep positive and prognostic uncertainty. Potential facilitators of ACP included: early and frequent discussion of ACP, incorporating ACP into routine care, involvement of the multidisciplinary team and framing discussions on ACP as positive.

Conclusions: Haematopoietic stem cell transplantation poses unique challenges for patients, families and clinicians when it comes to ACP. Introducing advance care planning as part of standard care and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset and when complications arise may assist patients and families in recognising how ACP can fit into and enhance their care.
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http://dx.doi.org/10.12968/ijpn.2018.24.3.132DOI Listing
March 2018

Who needs palliative care?

Authors:
Jessica Simon

CMAJ 2018 03;190(9):E234-E235

Department of Oncology, Faculty of Medicine, University of Calgary, Calgary, Alta.

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http://dx.doi.org/10.1503/cmaj.170956DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5837870PMC
March 2018

Do attentional capacities and processing speed mediate the effect of age on executive functioning?

Neuropsychol Dev Cogn B Aging Neuropsychol Cogn 2019 03 6;26(2):282-317. Epub 2018 Feb 6.

a GIGA-CRC in Vivo Imaging , University of Liège , Liège , Belgium.

The executive processes are well known to decline with age, and similar data also exists for attentional capacities and processing speed. Therefore, we investigated whether these two last nonexecutive variables would mediate the effect of age on executive functions (inhibition, shifting, updating, and dual-task coordination). We administered a large battery of executive, attentional and processing speed tasks to 104 young and 71 older people, and we performed mediation analyses with variables showing a significant age effect. All executive and processing speed measures showed age-related effects while only the visual scanning task performance (selective attention) was explained by age when controlled for gender and educational level. Regarding mediation analyses, visual scanning partially mediated the age effect on updating while processing speed partially mediated the age effect on shifting, updating and dual-task coordination. In a more exploratory way, inhibition was also found to partially mediate the effect of age on the three other executive functions. Attention did not greatly influence executive functioning in aging while, in agreement with the literature, processing speed seems to be a major mediator of the age effect on these processes. Interestingly, the global pattern of results seems also to indicate an influence of inhibition but further studies are needed to confirm the role of that variable as a mediator and its relative importance by comparison with processing speed.
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http://dx.doi.org/10.1080/13825585.2018.1432746DOI Listing
March 2019

Behaviors in Advance Care Planning and ACtions Survey (BACPACS): development and validation part 1.

BMC Palliat Care 2017 Nov 22;16(1):56. Epub 2017 Nov 22.

Department of Medicine, University of Alberta, Edmonton, AB, Canada.

Background: Although advance care planning (ACP) is fairly well understood, significant barriers to patient participation remain. As a result, tools to assess patient behaviour are required. The objective of this study was to improve the measurement of patient engagement in ACP by detecting existing survey design issues and establishing content and response process validity for a new survey entitled Behaviours in Advance Care Planning and ACtions Survey (BACPACS).

Methods: We based our new tool on that of an existing ACP engagement survey. Initial item reduction was carried out using behavior change theories by content and design experts to help reduce response burden and clarify questions. Thirty-two patients with chronic diseases (cancer, heart failure or renal failure) were recruited for the think aloud cognitive interviewing with the new, shortened survey evaluating patient engagement with ACP. Of these, n = 27 had data eligible for analysis (n = 8 in round 1 and n = 19 in rounds 2 and 3). Interviews were audio-recorded and analyzed using the constant comparison method. Three reviewers independently listened to the interviews, summarized findings and discussed discrepancies until consensus was achieved.

Results: Item reduction from key content expert review and conversation analysis helped decrease number of items from 116 in the original ACP Engagement Survey to 24-38 in the new BACPACS depending on branching of responses. For the think aloud study, three rounds of interviews were needed until saturation for patient clarity was achieved. The understanding of ACP as a construct, survey response options, instructions and terminology pertaining to patient engagement in ACP warranted further clarification.

Conclusions: Conversation analysis, content expert review and think aloud cognitive interviewing were useful in refining the new survey instrument entitled BACPACS. We found evidence for both content and response process validity for this new tool.
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http://dx.doi.org/10.1186/s12904-017-0236-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5700663PMC
November 2017