Reliability and Validity of the Youth and Young-Adult Participation and Environment Measure (Y-PEM): An Initial Evaluation.

AIM: To examine psychometric properties and aspects of utility of the Youth and young-adult Participation and Environment Measure (Y-PEM). METHODS: Young people with and without physical disabilities (n = 113) aged 12 to 31 (x¯ = 23; SD = 4.3) completed an online survey containing the Y-PEM and QQ-10 questionnaire. To examine construct validity, differences in participation levels and environmental barriers/facilitators were examined between those with (n = 56) and without disabilities (n = 57) via t-test. Internal consistency was computed using Cronbach's alpha. To examine test-retest reliability, a sub-sample of 70 participants completed the Y-PEM a second time, 2-4 weeks apart. The Intraclass correlation coefficient (ICC) was calculated. RESULTS: Descriptively, participants with disabilities had lower levels of frequency and involvement across all four settings: home, school/educational, community, workplace. Internal consistency were 0.71 and above (up to 0.82) across all scales with the exception of home (0.52) and workplace frequency (0.61). Test-retest reliability were 0.70 and above (up to 0.85) across all settings except for environmental supports at school (0.66) and workplace frequency (0.43). Y-PEM was perceived as a valuable tool with relatively low burden. CONCLUSIONS: Initial psychometric properties are promising. Findings support Y-PEM's use as a feasible self-reported questionnaire for individuals aged 12-30 years old.

Quality assurance assessment of intra-acquisition diffusion-weighted and T2-weighted magnetic resonance imaging registration and contour propagation for head and neck cancer radiotherapy.

BACKGROUND/PURPOSE: Adequate image registration of anatomical and functional magnetic resonance imaging (MRI) scans is necessary for MR-guided head and neck cancer (HNC) adaptive radiotherapy planning. Despite the quantitative capabilities of diffusion-weighted imaging (DWI) MRI for treatment plan adaptation, geometric distortion remains a considerable limitation. Therefore, we systematically investigated various deformable image registration (DIR) methods to co-register DWI and T2-weighted (T2W) images. MATERIALS/METHODS: We compared three commercial (ADMIRE, Velocity, Raystation) and three open-source (Elastix with default settings [Elastix Default], Elastix with parameter set 23 [Elastix 23], Demons) post-acquisition DIR methods applied to T2W and DWI MRI images acquired during the same imaging session in twenty immobilized HNC patients. In addition, we used the non-registered images (None) as a control comparator. Ground-truth segmentations of radiotherapy structures (tumour and organs at risk) were generated by a physician expert on both image sequences. For each registration approach, structures were propagated from T2W to DWI images. These propagated structures were then compared with ground-truth DWI structures using the Dice similarity coefficient and mean surface distance. RESULTS: 19 left submandibular glands, 18 right submandibular glands, 20 left parotid glands, 20 right parotid glands, 20 spinal cords, and 12 tumours were delineated. Most DIR methods took <30 s to execute per case, with the exception of Elastix 23 which took ∼458 s to execute per case. ADMIRE and Elastix 23 demonstrated improved performance over None for all metrics and structures (Bonferroni-corrected p < 0.05), while the other methods did not. Moreover, ADMIRE and Elastix 23 significantly improved performance in individual and pooled analysis compared to all other methods. CONCLUSIONS: The ADMIRE DIR method offers improved geometric performance with reasonable execution time so should be favoured for registering T2W and DWI images acquired during the same scan session in HNC patients. These results are important to ensure the appropriate selection of registration strategies for MR-guided radiotherapy.

Implementation of an electronic patient-reported measure of barriers to antiretroviral therapy adherence with the Opal patient portal: Protocol for a mixed method type 3 hybrid pilot study at a large Montreal HIV clinic.

BACKGROUND: Adherence to antiretroviral therapy (ART) remains problematic. Regular monitoring of its barriers is clinically recommended, however, patient-provider communication around adherence is often inadequate. Our team thus decided to develop a new electronically administered patient-reported outcome measure (PROM) of barriers to ART adherence (the I-Score) to systematically capture this data for physician consideration in routine HIV care. To prepare for a controlled definitive trial to test the I-Score intervention, a pilot study was designed. Its primary objectives are to evaluate patient and physician perceptions of the I-Score intervention and its implementation strategy. METHODS: This one-arm, 6-month study will adopt a mixed method type 3 implementation-effectiveness hybrid design and be conducted at the Chronic Viral Illness Service of the McGill University Health Centre (Montreal, Canada). Four HIV physicians and 32 of their HIV patients with known or suspected adherence problems will participate. The intervention will involve having patients complete the I-Score through a smartphone application (Opal), before meeting with their physician. Both patients and physicians will have access to the I-Score results, for consideration during the clinic visits at Times 1, 2 (3 months), and 3 (6 months). The implementation strategy will focus on stakeholder involvement, education, and training; promoting the intervention's adaptability; and hiring an Application Manager to facilitate implementation. Implementation, patient, and service outcomes will be collected (Times 1-2-3). The primary outcome is the intervention's acceptability to patients and physicians. Qualitative data obtained, in part, through physician focus groups (Times 2-3) and patient interviews (Times 2-3) will help evaluate the implementation strategy and inform any methodological adaptations. DISCUSSION: This study will help plan a definitive trial to test the efficacy of the I-Score intervention. It will generate needed data on electronic PROM interventions in routine HIV care that will help improve understanding of conditions for their successful implementation. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04702412; https://clinicaltrials.gov/.

Outcomes of neonatal hypothermia among very low birth weight infants: a Meta-analysis.

BACKGROUND: Neonatal admission hypothermia (HT) is a frequently encountered problem in neonatal intensive care units (NICUs) and it has been linked to a higher risk of mortality and morbidity. However, there is a disparity in data in the existing literature regarding the prevalence and outcomes associated with HT in very low birth weight (VLBW) infants. This review aimed to provide further summary and analyses of the association between HT and adverse clinical outcomes in VLBW infants. METHODS: In July 2020, we conducted this review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic database search was conducted in MEDLINE (PubMed), Google Scholar, ScienceDirect, World Health Organization Virtual Health Library, Cochrane Library databases, and System for Information on Grey Literature in Europe (SIGLE). We included studies that assessed the prevalence of HT and/or the association between HT and any adverse outcomes in VLBW infants. We calculated the pooled prevalence and Odds Ratio (OR) estimates with the corresponding 95% Confidence Interval (CI) using the Comprehensive meta-analysis software version 3.3 (Biostat, Engle-wood, NJ, USA; http://www.Meta-Analysis.com ). RESULTS: Eighteen studies that fulfilled the eligibility criteria were meta-analyzed. The pooled prevalence of HT among VLBW infants was 48.3% (95% CI, 42.0-54.7%). HT in VLBW infants was significantly associated with mortality (OR = 1.89; 1.72-2.09), intra-ventricular hemorrhage (OR = 1.86; 1.09-3.14), bronchopulmonary dysplasia (OR = 1.28; 1.16-1.40), neonatal sepsis (OR = 1.47; 1.09-2.49), and retinopathy of prematurity (OR = 1.45; 1.28-1.72). CONCLUSION: Neonatal HT rate is high in VLBW infants and it is a risk factor for mortality and morbidity in VLBW infants. This review provides a comprehensive view of the prevalence and outcomes of HT in VLBW infants.

Health Technology Assessment in High, Middle, and Low-income Countries: New Systematic and Interdisciplinary Approach For Sound Informed-policy Making: Research Protocole.

Technological innovation has a significant role in improving health systems (HSs) and achieving universal health coverage (UHC). The World Health Organization (WHO) has declared resolutions on Health Technology Assessment (HTA) and other global organizations emphasized on HTA systems to achieve the Sustainable Development Goals (SDGs). HTA is a modern multidisciplinary decision-making framework linking knowledge and policymaking by assessing the medical, social, economic, organizational, and ethical effects, and/or impacts within health and social systems. The research significance lies in the growing need for HTA at these moments than ever as it is seen as an essential development approach to tackle the current global challenges and pandemics, particularly in developing countries. The research aims to comprehensively evaluate and understand HTA systems concerning the level of knowledge about HTA, current HTA structure, practices, application, capacity, gaps, and solutions. The project starts in January 2021 and ends in January 2022 and will be carried out in seven countries: Canada, Switzerland, Brazil, Lebanon, Jordan, Palestine, and Tanzania. A mixed-methods, quantitative and qualitative, along with a literature review will be applied. In each country, ten HTA-associated institutions will complete an adapted electronic survey, developed by the WHO, and ten key-informants selected purposively from the government, academia, NGOs, and private sectors to participate in ten individual in-depth interviews. One government representative from each country will participate in one expanded inter-country workshop. Excel, IBM Statistical Package for the Social Sciences (SPSS), and MAXQDA software programs will be used for data management and analysis. The research will form cutting-edge evidence not only for the seven countries, but also for the global, regional, and national endeavors with regards to opening a room for HTA best application and optimization. It will reveal lessons learned, determine gaps, and build a well-enabled and institutionalized HTA for better UHC, health systems, and multi-sectoral development.

Caregiver willingness to vaccinate their children against COVID-19: Cross sectional survey.

BACKGROUND: More than 100 COVID-19 vaccine candidates are in development since the SARS-CoV-2 genetic sequence was published in January 2020. The uptake of a COVID-19 vaccine among children will be instrumental in limiting the spread of the disease as herd immunity may require vaccine coverage of up to 80% of the population. Prior history of pandemic vaccine coverage was as low as 40% among children in the United States during the 2009 H1N1 influenza pandemic. PURPOSE: To investigate predictors associated with global caregivers' intent to vaccinate their children against COVID-19, when the vaccine becomes available. METHOD: An international cross sectional survey of 1541 caregivers arriving with their children to 16 pediatric Emergency Departments (ED) across six countries from March 26 to May 31, 2020. RESULTS: 65% (n = 1005) of caregivers reported that they intend to vaccinate their child against COVID-19, once a vaccine is available. A univariate and subsequent multivariate analysis found that increased intended uptake was associated with children that were older, children with no chronic illness, when fathers completed the survey, children up-to-date on their vaccination schedule, recent history of vaccination against influenza, and caregivers concerned their child had COVID-19 at the time of survey completion in the ED. The most common reason reported by caregivers intending to vaccinate was to protect their child (62%), and the most common reason reported by caregivers refusing vaccination was the vaccine's novelty (52%). CONCLUSIONS: The majority of caregivers intend to vaccinate their children against COVID-19, though uptake will likely be associated with specific factors such as child and caregiver demographics and vaccination history. Public health strategies need to address barriers to uptake by providing evidence about an upcoming COVID-19 vaccine's safety and efficacy, highlighting the risks and consequences of infection in children, and educating caregivers on the role of vaccination.

Patient- and proxy-reported outcome measures instruments for the assessment of asthma control among adult and pediatric population: A protocol for systematic review.

BACKGROUND: Asthma is a chronic airways inflammatory disease considered as a serious public health problem. Since asthma is a lifelong condition, the assessment of its control is important to achieve a better self-management. Based on the advances of the assessment tools, many instruments have been developed to assess asthma control. Therefore, this systematic review aims to assess the measurement properties, the methodological quality, and the content of outcome measures of the available patient- and proxy-reported asthma control instruments. METHODS: This is a systematic review protocol of the measurement properties of asthma control patient- and proxy-reported outcome instruments. Database searches will be primarily performed on MEDLINE, EMBASE, Web of Science, ScienceDirect and PsycINFO. A manual search of websites considered databases for questionnaires and reference lists will also be conducted. The methodological quality of the studies and the measurement properties will be critically appraised using the COSMIN risk of bias (RoB) checklist. The content of all measurement instruments will be compared based on the International Classification of Functioning, Disability and Health framework. RESULTS: The findings from this systematic review will be disseminated through publication in a peer-reviewed journal and presented at scientific conferences. CONCLUSION: The proposed systematic review will produce a comprehensive evaluation of the measurement properties of the currently available asthma control instruments for both adult and pediatric populations. We aim to help researchers and practitioners in their choice of an adequate instrument and to highlight the gaps in currently available tools. SYSTEMATIC REVIEW REGISTRATION: PROSPERO registration number: CRD42019126042.

A mixed-methods approach to understanding partnership experiences and outcomes of projects from an integrated knowledge translation funding model in rehabilitation.

BACKGROUND: Integrated knowledge translation (IKT) can optimize the uptake of research evidence into clinical practice by incorporating knowledge users as equal partners in the entire research process. Although several studies have investigated stakeholder involvement in research, the literature on partnerships between researchers and clinicians in rehabilitation and their impact on clinical practice is scarce. This study described the individual research projects, the outcomes of these projects on clinical practice and the partnership experiences of an initiative that funds IKT projects co-led by a rehabilitation clinician and a researcher. METHODS: This was a sequential explanatory mixed methods study where quantitative data (document reviews and surveys) informed the qualitative phase (focus groups with researchers and interviews with clinicians). Descriptive analysis was completed for the quantitative data and thematic analysis was used for the qualitative data. RESULTS: 53 projects were classified within multiple steps of the KTA framework. Descriptive information on the projects and outcomes were obtained through the survey for 37 of the 53 funded projects (70%). Half of the respondents (n = 18) were very satisfied or satisfied with their project's impact. Only two (6%) projects reported having measured sustainability of their projects and four (11%) measured long-term impact. A focus group with six researchers and individual interviews with nine clinicians highlighted the benefits (e.g. acquired collaborative skills, stronger networks between clinicians and academia) and challenges (e.g. measuring KT outcomes, lack of planning for sustainability, barriers related to clinician involvement in research) of participating in this initiative. Considerations when partnering on IKT projects included: the importance of having a supportive organization culture and physical proximity between collaborators, sharing motives for participating, leveraging everyone's expertise, grounding projects in KT models, discussing feasibility of projects on a restricted timeline, and incorporating the necessary knowledge users. Clinicians discussed the main outputs (scientific contribution, training and development, increased awareness of best practice, step in a larger effort) as project outcomes, but highlighted the complexity of measuring outcomes on clinical practice. CONCLUSION: The study provides a portrait of an IKT funding model, sheds light on past IKT projects' strengths and weaknesses and provides strategies for promoting positive partnership experiences between researchers and rehabilitation clinicians.

Integrating the perspectives of individuals with spinal cord injuries, their family caregivers and healthcare professionals from the time of rehabilitation admission to community reintegration: protocol for a scoping study on SCI needs.

INTRODUCTION: There is fragmented information about the different needs following a spinal cord injury (SCI). Expressed SCI needs can be met or unmet, they change along the rehabilitation continuum (eg, acute, rehabilitation and reintegration into the community) and can be different for traumatic and non traumatic SCI. The general objective of this scoping study is to evaluate and integrate the needs of individuals with traumatic and non-traumatic SCI, their family caregivers and those reported by rehabilitation professionals from the time of rehabilitation admission to community reintegration. The specific objectives are to: (A) synthesise the needs of individuals with SCI as perceived by themselves, their family caregivers and rehabilitation professionals using two theoretical models, (B) classify needs as met and unmet, (C) explore the evolution of met/unmet needs from the time of rehabilitation admission to community reintegration and (D) provide recommendations to improve SCI care. METHODS AND ANALYSIS: (A) identifying the most frequent met and unmet needs reported by adults with traumatic and non-traumatic SCI, their family caregivers and their rehabilitation professionals from the time of rehabilitation admission to community reintegration; (B) identifying relevant studies with a search in electronic databases; (C) charting the data based on categories refined and adjusted with a stakeholder group; (D) collating, summarising and reporting the results using two analytical frameworks (Maslow's hierarchical model of human needs and the Ferrans et al's model of health-related quality of life) and (E) a stakeholder consultation phase. ETHICS AND DISSEMINATION: The results of this scoping study will allow understanding SCI needs from the time of rehabilitation admission to community reintegration from the perspective of different stakeholders. An integrated master report combining the needs of individuals with SCI from the perspectives of different stakeholders from the time of rehabilitation admission to community reintegration will follow the consultation meetings.

Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 5: patient-reported outcomes can be linked to epidemiologic measures to monitor populations and inform public health decisions.

BACKGROUND: A comprehensive picture of population health status can be captured by the incorporation of patient-reported outcome measures into population health monitoring. OBJECTIVE: The aim of the study was to identify the current state, opportunities, and future research related to the utilization of patient-reported outcome measures for population health monitoring in Canada. DISCUSSIONS: Patient-reported outcome measures can help to identify community health needs in public health topics including injury, chronic disease, and communicable disease. They are currently collected in major national surveys in Canada, while electronic medical records, personal health records, and online patient communities could facilitate rapid and cost-effective collection of population-based data. Their effective use requires well-validated measurements and consideration to the factors affecting validity and reproducibility and the modes of administering questionnaires. Methodologically, relevant public health application of patient-reported outcome measures includes analysis assessing measurement comparability across sociodemographically and clinically diverse population and the influence of physical and social environment. Research is needed to develop and apply analytical methods, harmonize patient-reported outcome measures across data sources and health jurisdictions, and link these measures to traditional epidemiologic indicators. Achieving these goals will benefit from collaboration among governmental agencies and expert groups.

Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 3: patient-reported outcomes can facilitate shared decision-making and guide self-management.

BACKGROUND: There is a shift toward making health care patient centered, whereby patients are part of medical decision-making and take responsibility for managing their health. Patient-reported outcomes (PROs) capture the patient voice and can be used to engage patients in medical decision-making. OBJECTIVE: The objective of this paper is to present important factors from patients', clinicians', researchers', and decision-makers' perspectives that influence successful adoption of PROs in clinical practice. Factors recommended in this paper were informed by a patient partner. DISCUSSION: Based on themes arising from the Montreal Accord proceedings, we describe factors that influence the adoption of PROs and how PROs can have a positive effect by enhancing communication and providing opportunities to engage patients, carers, and clinicians in care. Consideration of patient factors (e.g., health literacy), family support and networks (e.g., peer-support networks), technology (e.g., e-health), and health care system factors (e.g., resources to implement PROs) is necessary to ensure PROs are successfully adopted. PRO evaluation plans most likely to succeed over the long term are those incorporating PROs identified by patients as necessary for self-management and that coincide with providers' needs for collaboratively developing treatment plans with patients and families.

Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 8: patient-reported outcomes in electronic health records can inform clinical and policy decisions.

BACKGROUND: Given that the goal of health care systems is to improve and maintain the health of the populations they serve, the indicators of performance must include outcomes that are meaningful to patients. The growth of health technologies provides an unprecedented opportunity to integrate the patient voice into clinical care by linking electronic health records (EHRs) to patient-reported outcome (PRO) data collection. However, PRO data must be relevant, meaningful, and actionable for those who will have to invest the time and effort to collect it. OBJECTIVE: In this study, we highlight opportunities to integrate PRO data collection into EHRs. We consider how stakeholder perspectives should influence the selection of PROs and ways to enhance engagement in and commitment to PRO implementation. We propose a research and policy agenda to address unanswered questions and facilitate the widespread adoption of PRO data collection into EHRs. DISCUSSION: Building a learning health care system that gathers PRO data in ways that can inform individual patient care, quality improvement, and comparative effectiveness research has the potential to accelerate the application of new evidence and knowledge to patient care.

Searching for Best Direction in Healthcare: Distilling Opportunities, Priorities and Responsibilities.

Canada's health and its care are evolving. Evidence from serial Health Care in Canada surveys of the public and health professionals over the last two decades reveal a persistent sense of care quality, despite an aging population, decreasing levels of good and excellent health, increasing prevalence of chronic illnesses; and sub-optimal access to timely and patient-centred care. Stakeholders are, however, somewhat pessimistic and many sense complete rebuilding, or major changes, may be necessary. To improve access, the primary health concern of all Canadians - increasing medical and nursing school enrolment, and requiring professionals to work in teams - have attracted increasingly high support from both the public and professionals. However, physicians' support lags behind that of nursing, pharmacy and administrative colleagues; and, currently, only a minority of patients and professionals are actively involved in team care programs. Another example in which high levels of support may not necessarily translate into priority implementation of promising interventions is the realm of patient-centred care. The public and all professionals report a very high level of general support for care provided in a caring and respectful manner. However, while the public rank it second in implementation priority, following timely access, the majority of professionals rank it only fourth. By contrast, there is remarkable pan-stakeholder concordance around interventions to improve the overall health system, with the majority of public and professional stakeholders rating the creation of national supply systems as their top priority to expedite the clinical and cost efficiency of new treatments. There is a similar pan-stakeholder concordance around priority of responsibility to drive innovations, the top three being: federal/provincial governments; research hospitals/regional health authorities; and the pharmaceutical industry. In summary, Canadians are at a healthcare crossroads. Population health is decreasing, chronic diseases are increasing and desire for timely access to patient-centred, team-delivered and technology-supported care remain top concerns. Despite some disconnects between theoretical support for, and priority to implement, promising innovations, there is universal support to optimize resources to make things better. And there is concordance around the leadership best suited to lead innovation. Things can be better.

Performance and quality indicators for the management of non-cancer chronic pain: a scoping review protocol.

INTRODUCTION: Chronic pain is a public health problem of epidemic proportion in most countries with important physical, psychological, social and economic consequences. The management of chronic pain is complex and requires an integrated network approach between all levels of the healthcare system and the involvement of several health professionals from different disciplines. Measuring the performance of organisations that provide care to individuals with chronic pain is essential to improve quality of care and requires the use of relevant performance and quality indicators. A scoping review methodology will be used to synthesise the evidence on performance and quality indicators developed for non-cancer chronic pain management across the continuum of care. METHODS AND ANALYSIS: The following electronic databases will be searched from 2000 onwards: Cochrane Effective Practice and Organisation of Care (EPOC) Review Group Specialised Register; Cochrane Library; EMBASE; PubMed; CINAHL; PsycINFO; ProQuest Dissertations and Theses. All types of studies will be included if these are concerned with performance or quality indicators in adults with chronic non-cancer pain. In addition, searches will be conducted on provincial, national and international health organisations as well as health professional and scientific associations' websites. A qualitative descriptive approach will be used to describe characteristics of each indicator. All identified indicators will be classified according to dimensions covered by Donabedian and the Triple Aim frameworks. ETHICS AND DISSEMINATION: The scoping review findings will inform the development of a performance measurement system comprising a list of performance indicators with their level of evidence which can be used by stakeholders to evaluate the quality of care for individuals with chronic non-cancer pain at the patient, institutional and system level. The results will be disseminated via several knowledge translation strategies, including 2 stakeholder meetings, publication and presentation at conferences.

The prevention and management of chronic disease in primary care: recommendations from a knowledge translation meeting.

BACKGROUND: Seven chronic disease prevention and management programs were implemented across Quebec with funding support from a provincial-private industry funding initiative. Given the complexity of implementing integrated primary care chronic disease management programs, a knowledge transfer meeting was held to share experiences across programs and synthesize common challenges and success factors for implementation. METHODS: The knowledge translation meeting was held in February 2014 in Montreal, Canada. Seventy-five participants consisting of 15 clinicians, 14 researchers, 31 knowledge users, and 15 representatives from the funding agencies were broken up into groups of 10 or 11 and conducted a strengths, weaknesses, opportunities, and threats analysis on either the implementation or the evaluation of these chronic disease management programs. Results were reported back to the larger group during a plenary and recorded. Audiotapes were transcribed and summarized using pragmatic thematic analysis. RESULTS AND DISCUSSION: Strengths to leverage for the implementation of the seven programs include: (1) synergy between clinical and research teams; (2) stakeholders working together; (3) motivation of clinicians; and (4) the fact that the programs are evidence-based. Weaknesses to address include: (1) insufficient resources; (2) organizational change within the clinical sites; (3) lack of referrals from primary care physicians; and (4) lack of access to programs. Strengths to leverage for the evaluation of these programs include: (1) engagement of stakeholders and (2) sharing of knowledge between clinical sites. Weaknesses to address include: (1) lack of referrals; (2) difficulties with data collection; and (3) difficulties in identifying indicators and control groups. Opportunities for both themes include: (1) fostering new and existing partnerships and stakeholder relations; (2) seizing funding opportunities; (3) knowledge transfer; (4) supporting the transformation of professional roles; (5) expand the use of health information technology; and (6) conduct cost evaluations. Fifteen recommendations related to mobilisation of primary care physicians, support for the transformation of professional roles, and strategies aimed at facilitating the implementation and evaluation of chronic disease management programs were formulated based on the discussions at this knowledge translation event. CONCLUSION: The results from this knowledge translation day will help inform the sustainability of these seven chronic disease management programs in Quebec and the implementation and evaluation of similar programs elsewhere.

Contributions and Challenges of Non-Professional Patient Care: A Key Component of Contemporary Canadian Healthcare.

The Canadian public is aging. Population levels of excellent, or very good, health are decreasing, and the prevalence of chronic diseases is increasing. Timely access to caring and respectful care from health professionals, with supporting information transfer, are key qualities in patients' sense of centricity and hope for best outcomes. Data from the 2013-2014 Health Care in Canada (HCIC) survey reveal, however, that 38% of such patients do not always, or often, access this support. The lack of timely access may be one underlying driver for non-professional caregivers to contribute to the care, as well as the personal and financial management, of family members or friends with chronic disease. Previous HCIC surveys, in 2005, 2006 and 2007, reported non-professional caregivers' prevalence in the adult public at 21, 23 and 26%, respectively, compared with 19% in the 2013-2014 survey. In all the surveys, a notable feature of non-professional care providers has been their universality of contribution, across age, sex, geography and time. Caregivers pay, however, a price. They have a lower level of self-related health, a higher incidence of chronic illness and net-negative impacts on relationships, career and finances, including use of personal savings (53%) and necessity of quitting their job (12%). Conversely, they infrequently claim available tax (12%) or compassionate care (11%) benefits. Interestingly, non-professional caregivers work in team-care settings with health professionals more frequently (29%) than patients in the general population with chronic illnesses (18%). Nonetheless, their current levels of always, or often, receiving assisting support (46%) and information (53%) from health professionals are lower than the respective results reported by the general public (65% and 68%). In conclusion, non-professional patient care in Canada is a common, longstanding and not-for-profit enterprise. It is more likely driven by altruistic caring or sense of duty that balance, or overwhelm, its associated personal, medical and financial burdens. In the short term, practical opportunities for enhancement include broader recognition of caregivers' contributions, their improved access to professional support and communication and wider use of available governmental financial support. All are likely to enhance both patient-centred care and lessen the practical burdens of caregivers. Things can be better.

Using decision support for population tracking of adherence to recommended asthma guidelines.

OBJECTIVE: Decision support systems linked to administrative databases provide a unique opportunity to monitor adherence to guidelines and target disease management strategies towards patients not receiving guideline-based therapy. The objective of this study was to evaluate the discrepancy between actual asthma treatments prescribed by primary care physicians compared to those recommended by evidence-based guidelines using a decision support tool linked to a provincial health administrative database. DESIGN: The drug and medical services information of individuals with asthma was identified from the provincial health database and was pushed through an asthma decision support system (ADSS). Recommendations aimed at optimising asthma treatment were generated on two index dates, 15 September 2007 (index date 1) and 15 March 2008 (index date 2). SETTING: Primary care settings in a large Canadian metropolitan area. PARTICIPANTS: Individuals with asthma and provincial health insurance primary and secondary outcome measures: well controlled asthma. RESULTS: 16 803 eligible individuals were identified on index date 1, and 18 103 on index date 2. The distribution of recommendation categories was similar on both index dates. 94% were classified as well controlled and 7% as not well controlled. Among well-controlled individuals, the largest proportion was in the maintain treatment category (63.8%), followed by the maintain/decrease treatment category (28.2%) and the decrease treatment category (2.7%). Almost all individuals who were not well controlled had the recommendation to increase treatment (88%) with a small proportion in the refer category (1%). CONCLUSIONS: The ADSS was able to identify subgroups of patients from an administrative database that could benefit from a medication review and possible change. Decision support systems linked to an administrative database can be used to identify individuals with uncontrolled asthma or prescriptions that deviate from recommended treatment. When connected to the point of care, this can provide an opportunity for physicians to intervene early.

Innovations in e-health.

The theme of ISOQOL's 19th Annual Conference in Budapest, Hungary, was The Journey of Quality of Life Research: A Path Towards Personalized Medicine. Innovations in e-health was one of four plenary panels. E-health is changing the landscape of clinical practice and health care, but the best way to leverage the many promised benefits of emerging e-health technologies is still not clear. The Innovations in e-health panel presented emerging changes in technologies and applications that will facilitate clinical decision making, improve quality and efficiency of care, engage individuals in clinical decision making, and empower them to adopt healthy behaviors. The purpose of this paper was to present emerging trends in e-health and considerations for successful adoption of new technologies, and an overview of each of the presentations in the e-health plenary. The presentations included a personal perspective on the use of technology for self-monitoring in Parkinson's disease, an overview of online social networks and emerging technologies, and the collection of patient-reported outcomes through web-based systems in clinical practice. The common thread across all the talks was the application of e-health tools to empower individuals with chronic disease to be actively engaged in the management of their health. Considerations regarding data ownership and privacy, universal access to e-health, interactivity between different types of e-health technologies, and tailoring applications to individual needs were explored.

Stakeholder surveys of Canadian healthcare performance: what are they telling us? Who should be listening? Who should be acting, and how?

Eleven Health Care in Canada (HCIC) surveys, spanning 1998-2014, offer a comprehensive overview of the changing perceptions of physician, nurse, pharmacist, administrator and public stakeholders of the nation's health status, its burden of illness and its quality and cost of care. Overall, there persists a universal sense of quality in our health system--despite evidence that national health status is declining, chronic illnesses are increasing, patients' timely access to care and ability to afford care are diminishing and all these indicators are predicted to worsen over time. Among the public and health professionals, key priorities for improving future patient care are increasing professional schools' output and team-based care, along with enhanced use of national supply systems to reduce costs of care. Among HCIC survey partners, the overarching goal has been, and remains, the utilization of knowledge gained from the surveys to facilitate evidence-driven health policy and improved patient care and outcomes. Practical foci are the development of knowledge translation (KT) activities and assessment of their impact. This paper outlines current initiatives to track reach of member and non-member audiences for HCIC information; to ascertain how they perceive and value the various KT messages, vehicles and metrics; and to potentially identify a hierarchy of efficacy for impact factors. The primary objective is to inform future HCIC survey design and reporting, especially identification of KT vehicles and venues that are most effective in terms of reach and impact in facilitating understanding of, and subsequent action around, the knowledge generated.