Consensus group sessions: a useful method to reconcile stakeholders’ perspectives about network performance evaluation

Background: Having a common vision among network stakeholders is an important ingredient to developing a performance evaluation process. Consensus methods may be a viable means to reconcile the perceptions of different stakeholders about the dimensions to include in a performance evaluation framework. Objectives: To determine whether individual organizations within traumatic brain injury (TBI) networks differ in perceptions about the importance of performance dimensions for the evaluation of TBI networks and to explore the extent to which group consensus sessions could reconcile these perceptions. Methods: We used TRIAGE, a consensus technique that combines an individual and a group data collection phase to explore the perceptions of network stakeholders and to reach a consensus within structured group discussions. Results: One hundred and thirty-nine professionals from 43 organizations within eight TBI networks participated in the individual data collection; 62 professionals from these same organisations contributed to the group data collection. The extent of consensus based on questionnaire results (e.g. individual data collection) was low, however, 100% agreement was obtained for each network during the consensus group sessions. The median importance scores and mean ranks attributed to the dimensions by individuals compared to groups did not differ greatly. Group discussions were found useful in understanding the reasons motivating the scoring, for resolving differences among participants, and for harmonizing their values

Relationships between Cognitive Functioning and Powered Mobility Device Use: A Scoping Review

Background. Powered mobility devices (PMD) promote independence, social participation, and quality of life for individuals with mobility limitations. However, some individuals would benefit from PMD, but may be precluded access. This is particularly true for those with cognitive impairments who may be perceived as unsafe and unable to use a PMD. This study explored the relationships between cognitive functioning and PMD use. The objectives were to identify cognitive functions necessary to use a PMD and describe available PMD training approaches. Methods. A scoping review was undertaken. Results. Seventeen studies were included. Four examined the predictive or correlational relationships between cognitive functioning and PMD use outcomes with intellectual functions, visual and visuospatial perception, attention, abstraction, judgement, organization and planning, problem solving, and memory identified as having a relation with PMD use outcome in at least one study. Thirteen others studied the influence of PMD provision or training on users’ PMD capacity and cognitive outcomes and reported significative improvements of PMD capacities after PMD training. Six studies found improved cognitive scores after PMD training. Conclusions. Cognitive functioning is required to use a PMD. Individuals with heterogeneous cognitive impairment can improve their PMD capacities. Results contribute to advancing knowledge for PMD provision. © 2021 by the authors. Licensee MDPI, Basel, Switzerlan

GENLIB : an R package for the analysis of genealogical data

Background Founder populations have an important role in the study of genetic diseases. Access to detailed genealogical records is often one of their advantages. These genealogical data provide unique information for researchers in evolutionary and population genetics, demography and genetic epidemiology. However, analyzing large genealogical datasets requires specialized methods and software. The GENLIB software was developed to study the large genealogies of the French Canadian population of Quebec, Canada. These genealogies are accessible through the BALSAC database, which contains over 3 million records covering the whole province of Quebec over four centuries. Using this resource, extended pedigrees of up to 17 generations can be constructed from a sample of present-day individuals. Results We have extended and implemented GENLIB as a package in the R environment for statistical computing and graphics, thus allowing optimal flexibility for users. The GENLIB package includes basic functions to manage genealogical data allowing, for example, extraction of a part of a genealogy or selection of specific individuals. There are also many functions providing information to describe the size and complexity of genealogies as well as functions to compute standard measures such as kinship, inbreeding and genetic contribution. GENLIB also includes functions for gene-dropping simulations. The goal of this paper is to present the full functionalities of GENLIB. We used a sample of 140 individuals from the province of Quebec (Canada) to demonstrate GENLIB’s functions. Ascending genealogies for these individuals were reconstructed using BALSAC, yielding a large pedigree of 41,523 individuals. Using GENLIB’s functions, we provide a detailed description of these genealogical data in terms of completeness, genetic contribution of founders, relatedness, inbreeding and the overall complexity of the genealogical tree. We also present gene-dropping simulations based on the whole genealogy to investigate identical-by-descent sharing of alleles and chromosomal segments of different lengths and estimate probabilities of identical-by-descent sharing. Conclusions The R package GENLIB provides a user friendly and flexible environment to analyze extensive genealogical data, allowing an efficient and easy integration of different types of data, analytical methods and additional developments and making this tool ideal for genealogical analysis

Longitudinal follow-up of the asthma status in a French–Canadian cohort

Asthma affects 340 million people worldwide and varies in time. Twenty years ago, in Canada, the Saguenay–Lac-Saint-Jean asthma family cohort was created to study the genetic and environmental components of asthma. This study is a follow-up of 125 participants of this cohort to explore the appearance, persistence, and progression of asthma over 10–20 years. Participants answered a clinical standardized questionnaire. Lung function was assessed (forced expiratory volume in 1 s, forced vital capacity, bronchial reversibility, and methacholine bronchoprovocation), skin allergy testing was performed, blood samples were obtained (immunoglobulin E, white blood cell counts) and phenotypes were compared between recruitment and follow-up. From the participants without asthma at recruitment, 12% developed a phenotype of adult-onset asthma with the presence of risk factors, such as atopy, high body mass index, and exposure to smoking. A decrease of PC20 values in this group was observed and a decrease in the FEV1/FVC ratio in all groups. Also, 7% of individuals with asthma at recruitment developed chronic obstructive pulmonary disease, presenting risk factors at recruitment, such as moderate-to-severe bronchial hyperresponsiveness, exposure to smoking, and asthma. This study allowed a better interpretation of the evolution of asthma. Fine phenotypic characterization is the first step for meaningful genetic and epigenetic studies

Becoming a research participant : decision-making needs of individuals with neuromuscular diseases

BACKGROUND: Research has shown that some people with neuromuscular diseases may have a lower level of education due to lower socioeconomic status and possibly compromised health literacy. In view of these data, it appears important to document their decision-making needs to ensure better support when faced with the decision to participate or not in research projects. OBJECTIVES: 1) To document the decision-making needs of individuals with neuromuscular diseases to participate in research; 2) To explore their preferences regarding the format of knowledge translation tools related to research participation. METHODS: This qualitative study is based on the Ottawa Decision Support Framework. A two-step descriptive study was conducted to capture the decision-making needs of people with neuromuscular diseases related to research participation: 1) Individual semi-directed interviews (with people with neuromuscular diseases) and focus groups (with healthcare professionals); 2) Synthesis of the literature. RESULTS: The semi-directed interviews (n = 11), the two focus groups (n = 11) and the literature synthesis (n = 50 articles) identified information needs such as learning about ongoing research projects, scientific advances and research results, the potential benefits and risks associated with different types of research projects, and identified values surrounding research participation: helping other generations, trust, obtaining better clinical follow-up, and socialization. CONCLUSION: This paper provides useful recommendations to support researchers and clinicians in developing material to inform individuals with neuromuscular diseases about research participation

Organizational Knowledge Translation Strategies for Allied Health Professionals in Traumatology Settings: A Realist Review Protocol.

Background Knowledge translation (KT) is an important means of improving the health service quality. Most research on the effectiveness of KT strategies has focused on individual strategies, i.e., those directly targeting the modification of allied health professionals’ knowledge, attitudes, and behaviors, for example. In general, these strategies are moderately effective in changing practices (maximum 10% change). Effecting change in organizational contexts (e.g., change readiness, general and specific organizational capacity, organizational routines) is part of a promising new avenue to service quality improvement through the implementation of evidence-based practices. The objective of this study will be to identify why, how, and under what conditions organizational KT strategies have been shown to be effective or ineffective in changing the (a) knowledge, (b) attitudes, and (c) clinical behaviors of allied health professionals in traumatology settings. Methods This is a realist review protocol involving four iterative steps: (1) Initial theory formulation, (2) search for Evidence search, (3) knowledge extraction and synthesis, and (4) recommendations. We will search electronic databases such as PubMed, Embase, CINHAL, Cochrane Library, and Conference Proceedings Citation Index - Science. The studies included will be those relating to the use of organizational KT strategies in trauma settings, regardless of study designs, published between January 1990 and October 2020, and presenting objective measures that demonstrate change in allied health professionals’ knowledge, attitudes, and clinical behaviors. Two independent reviewers will select, screen, and extract the data related to all relevant sources in order to refine or refute the context-mechanism-outcome (CMO) configurations developed in the initial theory and identify new CMO configurations. Discussion Using a systematic and rigorous method, this review will help guide decision-makers and researchers in choosing the best organizational strategies to optimize the implementation of evidence-based practices

Chronic disease patients’ experience with telehealth interventions and self-care strategies during the first wave of the COVID-19 pandemic

Purpose. During COVID-19 pandemic, Québec (Canada) Public Health Agency asked Family Medicine Group (FMG) to change their practice such as recommending the use of telehealth interventions. However, it is unknown if telehealth meets patients' needs in terms of self-care, especially those suffered from physical and mental chronic condition (PCDs). This study aimed to explore, from a PCD's perspective, the response of FMG about their self-care needs during COVID-19 pandemic. Methods. We conducted an exploratory qualitative descriptive study using semi-structured interviews to reach 40 PCDs from three regions of Québec. We explored FMGs' responses, PCDs needs, coping strategies regarding the COVID-19 and the changes in primary care services. We used the transactional theory of stress and coping to inform the data collection and analysis and the COREQ appraisal grid to report this study. Results. PCDs appreciated telehealth and perceived that the accessibility was increased. Moreover, family physicians from FMG conducted the majority of the follow-ups although interdisciplinary teams were available. The coping strategies raised by the PCDs were primarily aimed at maintaining their health status, while some of them aimed to reduce stress levels. Conclusions. PCDs seem to appreciate telehealth but believe it requires improvements, and it is not adequate for all types of follow-ups. PCDs adopt coping strategies to face the pandemic that were not always optimal for their health. We call for a better understanding of PCDs' needs in times of a pandemic in order to offer them the appropriate services an interdisciplinary team can provide.http://deepblue.lib.umich.edu/bitstream/2027.42/167663/1/Article patients-covid copingVF_PP.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/167663/3/Article patients-covid coping VF_V2.pdfDescription of Article patients-covid copingVF_PP.pdf : Main ArticleSEL

Understanding the nervous system: Lessons from Frontiers in Neurophotonics

The Frontiers in Neurophotonics Symposium is a biennial event that brings together neurobiologists and physicists/engineers who share interest in the development of leading-edge photonics-based approaches to understand and manipulate the nervous system, from its individual molecular components to complex networks in the intact brain. In this Community paper, we highlight several topics that have been featured at the symposium that took place in October 2022 in Québec City, Canada

Étude longitudinale de la condition respiratoire de la cohorte familiale d’asthme du Saguenay–Lac-Saint-Jean

L'asthme est une maladie inflammatoire des voies respiratoires qui touche près de 340 millions de personnes dans le monde. Elle atteint des patients de tout âge et elle évolue dans le temps. Il y a vingt ans, la cohorte familiale de l'asthme du Saguenay–Lac-Saint-Jean a été construite pour étudier les composantes génétiques et environnementales de l'asthme. Cette étude est un suivi de 125 participants de cette cohorte pour explorer l'apparition, la persistance et la progression de l'asthme 10 à 20 ans après leur recrutement. Les participants ont répondu à un questionnaire clinique standardisé. La fonction pulmonaire a été évaluée (volume expiratoire maximal en 1 seconde [VEMS1], capacité vitale forcée [CVF], réversibilité bronchique et provocation à la méthacholine [PC20]), des tests d'allergie cutanée ont été effectués, des échantillons de sang ont été obtenus (immunoglobuline E, numération des globules blancs) et les phénotypes ont été comparés entre le recrutement et le suivi. Parmi les personnes sans asthme au moment du recrutement, 12 % ont développé un phénotype d'asthme adulte avec la présence de facteurs de risque, tels que l'atopie, un indice de masse corporelle élevé et l'exposition au tabagisme. Une augmentation de l’hyperréactivité bronchique (diminution de la PC20 méthacholine) a été observée dans ce groupe et une diminution du rapport VEMS1/CVF dans tous les groupes. De plus, 7 % des personnes asthmatiques au recrutement ont développé une maladie pulmonaire obstructive chronique. Ces personnes présentaient des facteurs de risque au recrutement, tels qu'une hyperréactivité bronchique modérée à sévère, ils étaient fumeurs ou exposés à la fumée de tabac et avaient un diagnostic d'asthme. Cette étude longitudinale a permis d’observer des différences significatives au niveau de la condition respiratoire des individus, 10 et 20 ans après leur recrutement et a permis une meilleure compréhension de l'évolution de l'asthme. La caractérisation phénotypique de l’asthme est une étape importante pour la suite des études d’épidémiologie génétique, de génétiques et épigénétiques