CMAJ open最新文献

Background: There are few data on patient and public involvement (PPI) in pragmatic trials. We aimed to describe the prevalence and nature of PPI within pragmatic trials, describe variation in prevalence of PPI by trial characteristics and compare prevalence of PPI reported by trial authors to that reported in trial publications.

Methods: We applied a search filter to identify pragmatic trials published from 2014 to 2019 in MEDLINE. We invited the corresponding authors of pragmatic trials to participate in an online survey about their specific trial.

Results: Of 3163 authors invited, 2585 invitations were delivered, 710 (27.5%) reported on 710 unique trials and completed the survey; 334 (47.0%) conducted PPI. Among those who conducted PPI, for many the aim was to increase the research relevance (86.3%) or quality (76.5%). Most PPI partners were engaged at protocol development stages (79.1%) and contributed to the co-design of interventions (70.9%) or recruitment or retention strategies (60.5%). Patient and public involvement was more common among trials involving children, trials conducted in the United Kingdom, cluster randomized trials, those explicitly labelled as "pragmatic" in the study manuscript, and more recent trials. Less than one-quarter of trials (22.8%) that reported PPI in the survey also reported PPI in the trial manuscript.

Interpretation: Nearly half of trialists in this survey reported conducting PPI and listed several benefits of doing so, but researchers who did not conduct PPI often cited a lack of requirement for it. Patient and public involvement appears to be significantly underreported in trial publications. Consistent and standardized reporting is needed to promote transparency about PPI methods, outcomes, challenges and benefits.

Background: Familial hypercholesterolemia is a common, inherited, life-threatening and treatable condition that is characterized by marked elevations of low-density lipoprotein cholesterol (LDL-C), resulting in a high risk of cardiovascular disease, but treatment starting in childhood dramatically reduces this risk. We sought to evaluate the prevalence of pediatric lipid assessments among children in Alberta.

Methods: We reviewed laboratory and administrative data from Alberta Health between Apr. 1, 2012, and Dec. 31, 2021. We evaluated 2 pediatric cohorts (children aged 2-10 yr and children aged 9-17 yr) to allow for longitudinal assessments throughout the pediatric period. We also reviewed annual frequencies of lipid assessment for all children between 2013 and 2021.

Results: Pediatric lipid assessments were performed for 1972 (4.3%) of 46 170 children aged 2-10 years and for 8158 (19.9%) of 40 926 children aged 9-17 years. Female children (aged 2-10 yr) and those living in rural communities were significantly less likely to have a lipid assessment, compared with male children and those in nonrural communities. Among those with lipid assessments, 23 (1.2%) and 86 (1.1%) children aged 2-10 years and 9-17 years, respectively, had an LDL-C level suggestive of probable familial hypercholesterolemia (≥ 4.0 mmol/L). Statin therapy was prescribed in 16 children during the study period. The frequency of lipid assessments was relatively stable, with the exception of a decrease in 2020.

Interpretation: Rates of pediatric lipid assessment in Alberta are suboptimal. These findings highlight the need to increase awareness of the benefits of early diagnosis and treatment of familial hypercholesterolemia with regard to long-term health and identify and overcome barriers to diagnosis and treatment.

Background: As the COVID-19 pandemic created a surge in demand for critical care resources, the province of Ontario, Canada, released the Adult Critical Care Clinical Emergency Standard of Care for Major Surge (Emergency Standard of Care [ESoC]), a triage framework to guide the allocation of critical care resources in the expectation that intensive care units would be overwhelmed. Our aim was to understand physicians' and administrators' experiences and perceptions of planning to implement the ESoC, and to identify ways to improve critical care triage processes for future pandemics.

Methods: We conducted semistructured qualitative interviews with critical care, emergency and internal medicine physicians, and hospital administrators from various Ontario health regions who were involved in their hospital's or region's ESoC implementation planning. Interviews were conducted virtually between April and October 2021. We analyzed the data using thematic analysis.

Results: We conducted interviews with 11 physicians and 10 hospital administrators representing 9 health regions. We identified 4 themes regarding participants' preparation to implement the ESoC: infrastructure to enable effective triage implementation; social, medical and political supports to enable effective triage implementation; moral dimensions of triage implementation; and communication of triage results. Participants outlined administrative and implementation-related improvements that could be provided at the provincial level, such as billing codes for ESoC. They also suggested improving ethical supports for the usability and quality of the ESoC (e.g., designating an ethicist in each region), and ways to improve the efficiency and usability of the tools for assessing short-term mortality risk (e.g., create information technology solutions such as a dashboard).

Interpretation: The implementation of a jurisdiction-level triage framework poses moral challenges for a health care system, but it also requires dedicated infrastructure, as well as institutional supports. Lessons learned from Ontario's process to prepare for ESoC implementation, as well as participants' suggestions, can be used for planning for current and future pandemics.

Background: Asian Canadians have experienced increased cases of racialized discrimination after the first emergence of SARS-CoV-2 in China. This study examined how the COVID-19 pandemic has affected Asian Canadians' sense of safety and belonging in their Canadian (i.e., geographical) communities.

Methods: We applied a qualitative description study design in which semistructured interviews were conducted from Mar. 23 to May 27, 2021. Purposive and snowball sampling methods were used to recruit Asian Canadians diverse in region, gender and age. Interviews were conducted through Zoom videoconference or telephone, and independent qualitative thematic analysis in duplicate was used to derive primary themes and subthemes.

Results: Thirty-two Asian Canadians (median age 35 [interquartile range 24-46] yr, 56% female, 44% East Asian) participated in the study. We identified 5 predominant themes associated with how the COVID-19 pandemic affected the participants' sense of security and belonging to their communities: relation between socioeconomic status (SES) and exposure to discrimination (i.e., how SES insulates or exposes individuals to increased discrimination); politics, media and the COVID-19 pandemic (i.e., the key role that politicians and media played in enabling spread of discrimination against and fear of Asian people); effect of discrimination on mental and social health (i.e., people's ability to interact and form meaningful relationships with others); coping with the impact of discrimination (i.e., the way people appraise and move forward in identity-threatening situations); and implications for sense of safety and sense of belonging (i.e., people feeling unable to safely use public spaces in person, including the need to remain alert in anticipation of harm, leading to distress and exhaustion).

Interpretation: During the COVID-19 pandemic, Asian Canadians in our study felt unsafe owing to the uncertain, unexpected and unpredictable nature of discrimination, but also felt a strong sense of belonging to Canadian society and felt well connected to their Asian Canadian communities. Future work should seek to explore the influence of social media on treatment of and attitudes toward Asian Canadians.

Background: Bartonella are gram-negative bacilli not identified by routine bacterial culture. The objectives of this study were to review the results of all serologic testing for Bartonella ordered in Manitoba, Canada, and to review cases with positive test results among adults to assess species identification, risk factors, clinical manifestations and outcomes.

Methods: This retrospective study included all Bartonella serologic tests ordered in Manitoba and performed at the National Microbiology Laboratory, Winnipeg, from Jan. 1, 2010, until Dec. 31, 2020. We analyzed the aggregate data for all serologic tests for Bartonella for patients of all ages. We reviewed the charts of adult (age ≥ 18 yr) patients with serologic positivity for Bartonella who had a medical chart at 1 of Winnipeg's 2 largest hospitals (Health Sciences Centre and St. Boniface Hospital) to extract clinical and demographic data and create a case series. Descriptive statistics were performed.

Results: During the study period, 1014 Bartonella serologic tests were ordered in adult and pediatric patients, of which 24 (2.4%) gave a positive result. Sixteen adults (12 men and 4 women; mean age 48 yr) seen at a participating hospital had a positive result. Molecular species-level identification occurred on explanted cardiac valves in 5 (31%) of the 16 cases; B. quintana was identified in all 5. Six patients (38%) were diagnosed with probable B. quintana infection, for a total of 11 B. quintana cases (69%); 8 (73%) of the 11 had endocarditis. Four cases of B. quintana infection (36%) were associated with rural residence. Four cases (25%) of probable B. henselae were identified; 2 patients had fever and lymphadenopathy, and 2 had endocarditis. The remaining patient was deemed to have a false-positive result as his B. henselae titre was at the threshold for positivity, his B. quintana serologic test gave a negative result, and his clinical syndrome was not suggestive of Bartonella infection. Two patients died; both had multivalvular B. quintana endocarditis with ruptured intracranial mycotic aneurysms.

Interpretation: Bartonella quintana was a common cause of Bartonella serologic positivity among adults in Manitoba in 2010-2020 and was associated with endocarditis and systemic embolization. As B. quintana is transmitted by body lice, active case finding for people who lack suitable housing, both in urban and rural settings, should prioritize those with elevated Bartonella titres to receive echocardiography and detect endocarditis before systemic embolization occurs.

Background: Genome-wide sequencing has emerged as a promising strategy for the timely diagnosis of rare diseases, but it is not yet available as a clinical test performed in Canadian diagnostic laboratories. We describe the protocol for evaluating a 2-year pilot project, Genome-wide Sequencing Ontario, to offer high-quality clinical genome-wide sequencing in Ontario, Canada.

Methods: The Genome-wide Sequencing Ontario protocol was codesigned by the Ontario Ministry of Health, the Hospital for Sick Children in Toronto and the Children's Hospital of Eastern Ontario in Ottawa. Enrolment of a prospective cohort of patients began on Apr. 1, 2021. Eligible cases with blood samples available for the index case and both parents (i.e., trios) are randomized to receive exome sequencing or genome sequencing. We will collect patient-level data and ascertain costs associated with the laboratory workflow for exome sequencing and genome sequencing. We will compare point estimates for the diagnostic utility and timeliness of exome sequencing and genome sequencing, and we will determine an incremental cost-effectiveness ratio (expressed as the incremental cost of genome sequencing versus exome sequencing per additional patient with a causal variant detected).

Interpretation: Findings from this work will provide robust evidence for the diagnostic utility, cost-effectiveness and timeliness of exome sequencing and genome sequencing, and will be disseminated via academic publications and policy briefs. Findings will inform provincial and cross-provincial policy related to the long-term organization, delivery and reimbursement of clinical-grade genome diagnostics for rare disease.

Background: Few studies have categorized high-cost patients (defined by accumulated health care spending above a predetermined percentile) into distinctive groups for which potentially actionable interventions may improve outcomes and reduce costs. We sought to identify homogeneous groups within the persistently high-cost population to develop a taxonomy of subgroups that may be targetable with specific interventions.

Methods: We conducted a retrospective analysis in which we identified adults (≥ 18 yr) who lived in Alberta between April 2014 and March 2019. We defined "persistently high-cost users" as those in the top 1% of health care spending across 4 data sources (the Discharge Abstract Database for inpatient encounters; Practitioner Claims for outpatient primary care and specialist encounters; the Ambulatory Care Classification System for emergency department encounters; and the Pharmaceutical Information Network for medication use) in at least 2 consecutive fiscal years. We used latent class analysis and expert clinical opinion in tandem to separate the persistently high-cost population into subgroups that may be targeted by specific interventions based on their distinctive clinical profiles and the drivers of their health system use and costs.

Results: Of the 3 919 388 adults who lived in Alberta for at least 2 consecutive fiscal years during the study period, 21 115 (0.5%) were persistently high-cost users. We identified 9 subgroups in this population: people with cardiovascular disease (n = 4537; 21.5%); people receiving rehabilitation after surgery or recovering from complications of surgery (n = 3380; 16.0%); people with severe mental health conditions (n = 3060; 14.5%); people with advanced chronic kidney disease (n = 2689; 12.7%); people receiving biologic therapies for autoimmune conditions (n = 2538; 12.0%); people with dementia and awaiting community placement (n = 2520; 11.9%); people with chronic obstructive pulmonary disease or other respiratory conditions (n = 984; 4.7%); people receiving treatment for cancer (n = 832; 3.9%); and people with unstable housing situations or substance use disorders (n = 575; 2.7%).

Interpretation: Using latent class analysis supplemented with expert clinical review, we identified 9 policy-relevant subgroups among persistently high-cost health care users. This taxonomy may be used to inform policy, including identifying interventions that are most likely to improve care and reduce cost for each subgroup.