The Residual Lesion Score is a novel tool for assessing the achievement of surgical objectives in congenital heart surgery based on widely available clinical and echocardiographic characteristics. This article describes the methodology used to develop the Residual Lesion Score from the previously developed Technical Performance Score for five common congenital cardiac procedures using the RAND Delphi methodology.

A panel of 11 experts from the field of paediatric and congenital cardiology and cardiac surgery, 2 co-chairs, and a consultant were assembled to review and comment on validity and feasibility of measuring the sub-components of intraoperative and discharge Residual Lesion Score for five congenital cardiac procedures. In the first email round, the panel reviewed and commented on the Residual Lesion Score and provided validity and feasibility scores for sub-components of each of the five procedures. In the second in-person round, email comments and scores were reviewed and the Residual Lesion Score revised. The modified Residual Lesion Score was scored independently by each panellist for validity and feasibility and used to develop the “final” Residual Lesion Score.

The Residual Lesion Score sub-components with a median validity score of ≥7 and median feasibility score of ≥4 that were scored without disagreement and with low absolute deviation from the median were included in the “final” Residual Lesion Score.

Using the RAND Delphi methodology, we were able to develop Residual Lesion Score modules for five important congenital cardiac procedures for the Pediatric Heart Network’s Residual Lesion Score study.

Increasing concern around perceived neurocognitive decline is increasing the number of referrals to specialists and anxiety for patients. We aimed to explore the likelihood of the “worried well” experiencing neurocognitive decline and developing a neurological diagnosis.

A total of 166 “worried well” patients who attended the Rural and Remote Memory Clinic (RRMC) between 2004 and 2019 were included in this study. Demographic, health, social, and behavioral factors were measured at the initial visit. Mini-Mental State Examination (MMSE), Center for Epidemiologic Studies Depression Scale (CESD), and Functional Activities Questionnaire (FAQ) scores were measured and compared at initial assessment and at 1-year follow-up. MMSE scores over time were assessed with a mean follow-up of 2.95 years (SD 2.87).

No statistically significant difference was seen in MMSE, CESD, or FAQ scores when comparing clinic day to 1-year follow-up, and no consistent pattern of MMSE score over time was seen. Of the 166 patients with subjective cognitive impairment (SCI) on initial assessment, 5 were diagnosed with Alzheimer’s disease (AD) at 8.5, 3.5, 5, 3, and 1.75 years; 2 were diagnosed with MCI at 1 and 2 years; 1 was diagnosed with vascular cognitive impairment at 5 years; and 1 was diagnosed with frontotemporal dementia (FTD) at 0.5 years.

The likelihood of a patient with SCI developing a neurological diagnosis is reassuringly low (9/166), but not irrelevant. This, along with the benefits of early diagnosis and treatment for dementia, leads us to believe that patients with SCI should still be seen in follow-up at least at the 1-year mark.

Young-onset dementia (YOD) is defined as the onset of dementia symptoms before the age of 65 years and accounts for 2–8% of dementia. YOD patients and their caregivers face unique challenges in diagnosis and management. We aimed to compare the characteristics of rural YOD and late-onset dementia (LOD) patients at a rural and remote memory clinic in Western Canada.

A total of 333 consecutive patients (YOD = 61, LOD = 272) at a rural and remote memory clinic between March 2004 and July 2016 were included in this study. Each patient had neuropsychological assessment. Health, mood, function, behaviour and social factors were also measured. Both groups were compared using χ2 tests and independent sample tests.

YOD patients were more likely to be married, employed, current smokers and highly educated. They reported fewer cognitive symptoms, but had more depressive symptoms. YOD patients were less likely to live alone and use homecare services. YOD caregivers were also more likely to be a spouse and had higher levels of distress than LOD caregivers. Both YOD and LOD patient groups were equally likely to have a driver’s licence.

Our findings indicate YOD and LOD patients have distinct characteristics and services must be modified to better meet YOD patient needs. In particular, the use of homecare services and caregiver support may alleviate the higher levels of distress found in YOD patients and their caregivers. Additional research should be directed to addressing YOD patient depression, caregiver distress and barriers to services.

This study is aimed at developing a Rural Primary Health Care (PHC) Model for delivering comprehensive PHC for dementia in rural settings and addressing the gap in knowledge about disseminating and implementing evidence-based dementia care in a rural PHC context.

Limited access to specialists and services in rural areas leads to increased responsibility for dementia diagnosis and management in PHC, yet a gap exists in evidence-based best practices for rural dementia care.

Elements of the Rural PHC Model for Dementia were based on seven principles of effective PHC for dementia identified from published research and organized into three domains: team-based care, decision support, and specialist-to-provider support. Since 2013 the researchers have collaborated with a rural PHC team in a community of 1000 people in the Canadian province of Saskatchewan to operationalize these elements in ways that were feasible in the local context. The five-step approach included: building relationships; conducting a problem analysis/needs assessment; identifying core and adaptable elements of a decision support tool embedded in the model and resolving applicability issues; implementing and adapting the intervention with local stakeholders; and sustaining the model while incrementally scaling up.

Developing and sustaining relationships at regional and PHC team levels was critical. A comprehensive needs assessment identified challenges related to all domains of the Rural PHC Model. An existing decision support tool for dementia diagnosis and management was adapted and embedded in the team’s electronic medical record. Strategies for operationalizing other model elements included integrating team-based care co-ordination into the decision support tool and family-centered case conferences. Research team specialists provided educational sessions on topics identified by the PHC team. This paper provides an example of a community-based process for adapting evidence-based practice principles to a real-world setting.

Although procedural sedation for cardioversion is a common event in emergency departments (EDs), there is limited evidence surrounding medication choices. We sought to evaluate geographic and temporal variation in sedative choice at multiple Canadian sites, and to estimate the risk of adverse events due to sedative choice.

This is a secondary analysis of one health records review, the Recent Onset Atrial Fibrillation or Flutter-0 (RAFF-0 [n=420, 2008]) and one prospective cohort study, the Recent Onset Atrial Fibrillation or Flutter-1 (RAFF-1 [n=565, 2010 – 2012]) at eight and six Canadian EDs, respectively. Sedative choices within and among EDs were quantified, and the risk of adverse events was examined with adjusted and unadjusted comparisons of sedative regimes.

In RAFF-0 and RAFF-1, the combination of propofol and fentanyl was most popular (63.8% and 52.7%) followed by propofol alone (27.9% and 37.3%). There were substantially more adverse events in the RAFF-0 data set (13.5%) versus RAFF-1 (3.3%). In both data sets, the combination of propofol/fentanyl was not associated with increased adverse event risk compared to propofol alone.

There is marked variability in procedural sedation medication choice for a direct current cardioversion in Canadian EDs, with increased use of propofol alone as a sedation agent over time. The risk of adverse events from procedural sedation during cardioversion is low but not insignificant. We did not identify an increased risk of adverse events with the addition of fentanyl as an adjunctive analgesic to propofol.

This study aimed to (a) examine eHealth literacy, beliefs, and behaviours in parents of children with complex CHD, and (b) identify parents’ preferences for the content, format, features, and functions of eHealth resources for CHD.

Families (n=198) of children born between 2008 and 2011 and diagnosed with CHD requiring surgery were mailed a survey assessing a range of variables including eHealth literacy, beliefs, and behaviours as well as preferences for the format, functions, features, and content of eHealth resources for CHD.

A total of 132 parents (83 mothers, 49 fathers) completed the survey (response rate: 50%). Mothers (96%) were more likely to access eHealth resources than fathers (83%, χ2=6.74, p=0.009). Despite high eHealth resource use, eHealth literacy was relatively low, with results demonstrating considerable and widespread gaps in awareness of, access to, and communication about eHealth resources. Over 50% of parents reported that decisions regarding their child’s healthcare were influenced, to some extent, by web-based resources. Barriers to doctor–patient communication about eHealth included limited consultation time and concern about doctors’ disapproval. Participants demonstrated a strong desire for “eHealth prescriptions” from their child’s healthcare team, and perceived a wide range of eHealth topics as highly important, including treatment-related complications as well as physical, cognitive, and emotional development in children with CHD.

Results suggest a need for stronger, more proactive partnerships between clinicians, researchers, educators, technologists, and patients and families to bring about meaningful innovations in the development and implementation of eHealth interventions in paediatric cardiology.