Outcome of Surgery for Hypothalamic Hamartoma-Related Epilepsy: A Systematic Review and Individual Participant Data Meta-Analysis.

Background And Objectives: There is a paucity of data directly comparing the outcome of surgical techniques available for the treatment of hypothalamic hamartomas (HHs). This study aims to evaluate the safety and efficacy of commonly used surgical approaches in the treatment of HH-related epilepsy.

Methods: A systematic review and individual participant data (IPD) meta-analysis was conducted.

Implementing a Patient Portal for the Remote Follow-Up of Self-Isolating Patients With COVID-19 Infection Through Patient and Stakeholder Engagement (the Opal-COVID Study): Mixed Methods Pilot Study.

Background: The COVID-19 pandemic was an unprecedent challenge to public health systems, with 95% of cases in Quebec sent home for self-isolation. To ensure continuous care, we implemented an intervention supported by a patient portal (Opal) to remotely monitor at-home patients with COVID-19 via daily self-reports of symptoms, vital signs, and mental health that were reviewed by health care professionals.

Objective: We describe the intervention's implementation, focusing on the (1) process; (2) outcomes, including feasibility, fidelity, acceptability, usability, and perceived response burden; and (3) barriers and facilitators encountered by stakeholders.

To What Extent Can Digital Health Technologies Comply With the Principles of Responsible Innovation? Practice-and Policy-Oriented Research Insights Regarding an Organisational and Systemic Issue.

Background: Digital health technologies (DHTs) have expanded exponentially since the COVID-19 crisis and have prompted questions about their impact across all levels of health systems. Because health organisations and systems play a central role in the success or failure of the transition to more equitable and sustainable societies, the concept of Responsible Innovation in Health (RIH), focused on aligning the processes and outcomes of innovation with societal values, is gaining interest in research, policy, and practice. This study aims to explore enablers and constraints to the development, procurement and/or utilisation of responsible DHTs in health organisations.

Towards a New Integrated Model for Taking Into Account the Experiential Knowledge of People With Chronic Diseases, Integrating Mediation, Therapeutic Education and Partnership: The Expanded Chronic Care Patient-Professional Partnership Model.

Introduction: The Chronic Care Model (CCM), the Expanded Chronic Care Model (ECCM) and the eHealth Enhanced Chronic Care Model (eCCM) focus on how healthcare teams and eHealth support can offer effective care and relevant solutions for patients facing chronic care conditions. However, they do not consider how patients can help these teams in their work, nor do they promote ways in which patients can help themselves. However, in the last decade, three different models have emerged that can complete our capacity to design and deliver integrated care for people with chronic diseases.

Brain Stiffness Correlates With Pathological Tissue in Patients With Drug-Resistant Epilepsy Due to Rasmussen Encephalitis and Focal Cortical Dysplasia.

Background And Objectives: Complete resection of epileptogenic zone is the single most important determinant of favorable seizure outcomes in resective surgery. However, identifying and resecting this zone is challenging in patients harboring diffuse; MRI-occult malformations of cortical development, such as focal cortical dysplasia; or acquired pathology, such as Rasmussen encephalitis. Intraoperative adjuncts that can aid in identifying the lesion and/or epileptogenic zone can optimize the extent of resection and seizure outcome.

How to mobilise users' experiential knowledge in the evaluation of advanced technologies and practices in Quebec? The example of the permanent users' and relatives' panel.

Introduction: With the purpose of supporting scientific professionals and helping them to better integrate the expertise of users in their work, a users' and relatives' panel (URP) was set up at the National Institute for Excellence in Health and Social Services in Quebec (INESSS), Canada for the social services and mental health directorate. URPs are advisory structures that mobilise the experiential knowledge of people affected by various issues.

Objectives: The objective of this study is to assess from a diverse stakeholders' perceptions: (1) the experience of developing and implementing the URP within the context of an Agencies for Health Technology Assessment and Assessment of Social Services (AHTAASS), (2) the contribution of such a URP, (3) the challenges encountered and (4) the perspectives of improvement for the following years.

The black box of the relationship between breast cancer patients and accompanying patients: the accompanied patients' point of view.

Background: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e.

Measuring Team Functioning During the COVID-19 Pandemic: Perspectives of Cancer Care Team Members.

Background: In a public health crisis such as COVID-19, cancer teams face significant challenges including acute work disruptions, rapid shifts in clinical practice, and burnout. Within this context, it is crucial to explore team functioning from the perspectives of multiple stakeholders.

Objective: This quantitative pilot study aimed to 1) measure perceptions of multi-stakeholders on key indicators of team functioning (Team Effectiveness, TE, and Team Relational Coordination, TRC) during COVID-19 and its transition, and 2) document whether patient perceptions of TE/TRC are significantly associated with their cancer care experiences.

Family screening for neurodevelopmental problems and its associations with child cognitive function enable tailored treatment for childhood obesity.

Aim: To identify neurodevelopmental disorders in children with obesity, and investigate associations to cognitive functions as well as parents' self-reported neurodevelopmental problems.

Methods: Eighty children were included at two outpatient obesity clinics in Sweden 2018-2019. Of these, 50 children without previously diagnosed neurodevelopmental disorders were screened, and so were their parents.

Adapting and Evaluating an AI-Based Chatbot Through Patient and Stakeholder Engagement to Provide Information for Different Health Conditions: Master Protocol for an Adaptive Platform Trial (the MARVIN Chatbots Study).

Background: Artificial intelligence (AI)-based chatbots could help address some of the challenges patients face in acquiring information essential to their self-health management, including unreliable sources and overburdened health care professionals. Research to ensure the proper design, implementation, and uptake of chatbots is imperative. Inclusive digital health research and responsible AI integration into health care require active and sustained patient and stakeholder engagement, yet corresponding activities and guidance are limited for this purpose.

Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors.

Objectives: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer.

Cross-Sector Collaboration to Improve Access to Community Services for People Living With Diabetes: Contributions From Actor-Network Theory.

Diabetes is a global public health issue. The Public Health Agency of Canada published a Diabetes Framework 2022 which recommends collaborative work across sectors to mitigate the impact of diabetes on health and quality of life. Since 2020, the INMED-COMMUNITY pathway has been implemented in Laval, Québec developing collaboration between healthcare and community sectors through a participatory action research approach.

Teenager Perspectives on COVID Alert, a Digital Exposure Notification App in Canada.

Purpose: COVID Alert is an exposure notification app deployed in Canada to help limit the spread of COVID-19.

Methods: This was a cross-sectional survey conducted in Québec, Canada. The questionnaire was codesigned with patients and members of the public.

A Pragmatic Randomized Trial Comparing Surgical Clipping and Endovascular Treatment of Unruptured Intracranial Aneurysms.

Background And Purpose: Surgical clipping and endovascular treatment are commonly used in patients with unruptured intracranial aneurysms. We compared the safety and efficacy of the 2 treatments in a randomized trial.

Materials And Methods: Clipping or endovascular treatments were randomly allocated to patients with one or more 3- to 25-mm unruptured intracranial aneurysms judged treatable both ways by participating physicians.

Accompanying patients in clinical oncology teams: Reported activities and perceived effects.

Introduction: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g.

Amyloid Deposits in a Functionally Unicuspid Stenotic Aortic Valve.

Amyloidosis concomitant to aortic stenosis usually occurs with myocardial infiltration by the transthyretin protein. To our knowledge, this is the first report of localized amyloidosis of indeterminate type in a severely calcified and functionally unicuspid aortic valve. Isolated dystrophic valvular amyloidosis is believed to be related to fibrocalcific valve disease.

Fantastic perspectives and where to find them: involving patients and citizens in digital health research.

Background: Digital contact tracing and exposure notification apps have quickly emerged as a potential solution to achieve timely and effective contact tracing for the SARS-CoV-2 virus. Nonetheless, their actual uptake remains limited. Citizens, including patients, are rarely consulted and included in the design and implementation process.

Protein intake, physical activity and grip strength in European and North American community-dwelling older adults: a pooled analysis of individual participant data from four longitudinal ageing cohorts.

Higher dietary protein, alone or in combination with physical activity (PA), may slow the loss of age-related muscle strength in older adults. We investigated the longitudinal relationship between protein intake and grip strength, and the interaction between protein intake and PA, using four longitudinal ageing cohorts. Individual participant data from 5584 older adults (52 % women; median: 75 years, IQR: 71·6, 79·0) followed for up to 8·5 years (mean: 4·9 years, SD: 2·3) from the Health ABC, NuAge, LASA and Newcastle 85+ cohorts were pooled.

Public Perspectives on Exposure Notification Apps: A Patient and Citizen Co-Designed Study.

Canada deployed a digital exposure notification app (COVID Alert) as a strategy to support manual contact tracing. Our aims are to (1) assess the use, knowledge, and concerns of the COVID Alert app, (2) identify predictors of app downloads, and (3) develop strategies to promote social acceptability. A 36-item questionnaire was co-designed by 12 citizens and patients partnered with 16 academic researchers and was distributed in the province of Québec, Canada, from May 27 to 28 June 2021.

Understanding cardiovascular disease in older adults with epilepsy.

Objective: This study was undertaken to investigate the distribution of social, lifestyle/behavior, and chronic disease risk factors for cardiovascular disease (CVD) in people with epilepsy as compared to the general population. We also measured the cross-sectional association between epilepsy and CVD in older adults, with and without adjustments for a history of stroke.

Methods: We analyzed data for 44 817 participants in the Canadian Longitudinal Study on Aging, including 751 individuals with a lifetime history of epilepsy.

How Can Health Systems Better Prepare for the Next Pandemic? Lessons Learned From the Management of COVID-19 in Quebec (Canada).

The magnitude of the COVID-19 pandemic challenged societies around our globalized world. To contain the spread of the virus, unprecedented and drastic measures and policies were put in place by governments to manage an exceptional health care situation while maintaining other essential services. The responses of many governments showed a lack of preparedness to face this systemic and global health crisis.