In-person, therapist-supported interventions targeting emotion regulation have been shown to improve the mental health of adolescents. Increasingly, self-directed digital interventions (e.g. mobile apps) are being developed as a cost-effective, scalable solution to widen access to support. However, evidence of the acceptability and feasibility of these interventions has yet to be synthesised.

To identify existing evidence on the benefits, acceptability and feasibility of self-directed digital interventions that target emotion regulation in adolescents (aged 11–18 years).

A Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA)-guided systematic review was conducted to identify studies published from 1 January 2010 to 13 November 2024 investigating self-directed digital emotion regulation interventions for adolescents. A total of ten electronic databases were searched (e.g. PsycInfo). Data on the effects, and perceived acceptability, of the interventions were extracted, with results narratively synthesised. Methodological quality was assessed using the Effective Public Health Practice Project Quality Assessment tool.

Six out of 9049 studies met the eligibility criteria and included preliminary evidence on self-directed digital interventions that target emotion regulation, in a pooled sample of 1271 adolescents. All interventions identified were brief (most <1 month) and included different components to target emotion regulation (e.g. mindfulness, mood monitoring). Most interventions demonstrated benefits for emotion regulation and were acceptable for use by an adolescent population.

Although the evidence base was small, the included studies demonstrate preliminary evidence of the benefits and acceptability of self-directed, digital interventions for emotion regulation in adolescents. Future research should focus on approaches beyond mindfulness, including components to target the related skills required to access emotion regulation strategies (e.g. emotional awareness) and use them flexibly.

There is preliminary evidence that childhood trauma (e.g., abuse) is associated with subclinical hypomania reported in adolescence. These findings need replicating in early adulthood, as clinical conditions emerge, and the mechanisms underlying this association need elucidating. This study aimed to examine the magnitude of shared genetic and environmental underpinnings of the association between childhood trauma with hypomanic symptoms and high-risk status for bipolar disorder (BD) using a twin design. Gene–environment correlations and interactions between childhood trauma and polygenic scores (PGS) for psychiatric and neurodevelopmental conditions were also investigated.

Childhood trauma was reported using the Avon “Life at 22+” questionnaire by 8,464 individuals from a community twin sample. Self-reported hypomanic symptoms were assessed using the Mood Disorder Questionnaire at age 26 by 7,748 participants. PGS for psychiatric and neurodevelopment conditions were derived from independent published discovery samples.

Childhood trauma was significantly associated with hypomanic symptoms (β = 0.23, 95% CI: 0.20–0.25) and being at high-risk for BD (OR = 1.77, 95% CI: 1.59–1.98). These associations were strongly influenced by genetic factors (bivariate heritability range: 0.51–0.90). Gene–environment correlations were found between childhood trauma and the PGS for six conditions: Major Depressive Disorder (MDD), schizophrenia, Attention-Deficit Hyperactivity Disorder, anxiety disorders, Post-Traumatic Stress Disorder, and BD II (β range = −0.19–0.11). The MDD-PGS was found to significantly interact with childhood trauma in hypomania (β = 0.01, p < .05).

The associations between childhood trauma and subclinical hypomania and high-risk for BD were partially attributed to shared genetic factors. These associations were also moderated by MDD-PGS. Gene–environment correlations were detected between childhood trauma and polygenic vulnerability to psychiatric and neurodevelopmental conditions. The etiology of hypomania and BD is likely the result of a confluence of genetic and environmental factors, and research in this area should account for potential genetic confounding.

Understanding disease-modifying therapy (DMT) use and healthcare resource utilization by different geographical areas among people living with multiple sclerosis (pwMS) may identify care gaps that can be used to inform policies and practice to ensure equitable care.

Administrative data was used to identify pwMS on April 1, 2017 (index date) in Alberta. DMT use and healthcare resource utilization were compared between those who resided in various geographical areas over a 2-year post-index period; simple logistic regression was applied.

Among the cohort (n = 12,338), a higher proportion of pwMS who resided in urban areas (versus rural) received ≥ 1 DMT dispensation (32.3% versus 27.4%), had a neurologist (67.7% versus 63.9%), non-neurologist specialist (88.3% versus 82.9%), ambulatory care visit (87.4% versus 85.3%), and MS tertiary clinic visit (59.2% versus 51.7%), and a lower proportion had an emergency department (ED) visit (46.3% versus 62.4%), and hospitalization (20.4% versus 23.0%). Across the provincial health zones, there were variations in DMT selection, and a higher proportion of pwMS who resided in the Calgary health zone, where care is managed by MS tertiary clinic neurologists, had an outpatient visit to a neurologist or MS tertiary clinic versus those who resided in other zones where delivery of MS-related care is more varied.

Urban/rural inequalities in DMT use and healthcare resource utilization appear to exist among pwMS in Alberta. Findings suggest the exploration of barriers with consequent strategies to increase access to DMTs and provide timely outpatient MS care management, particularly for those pwMS residing in rural areas.

The rising number of dementia diagnoses and imminent adoption of disease-modifying treatments necessitate innovative approaches to identify individuals at risk, monitor disease course and intervene non-pharmacologically earlier in the disease course. Digital assessments of dementia risk and cognitive function have the potential to outperform traditional in-person assessments in terms of their affordability, accuracy and longitudinal tracking abilities. However, their accessibility and reliability in older adults is unclear.

To evaluate the usability and reliability of a smartphone assessment of lifestyle and cognitive factors relevant to dementia risk in a group of UK-based older adults.

Cognitively healthy adults (n = 768) recruited through the Dementias Platform UK Great Minds volunteer register completed three assessments of cognitive function and dementia risk over a 3-month period and provided usability feedback on the Five Lives smartphone application (app). We evaluated cognitive test scores for age, gender and higher education effects, normality distributions, test–retest reliability and their relationship with participants’ lifestyle dementia risk factors.

Participants found the app ‘easy to use’, ‘quick to complete’ and ‘enjoyable’. The cognitive tests showed normal or near-to-normal distributions, variable test–retest reliabilities and age-related effects. Only tests of verbal ability showed gender and education effects. The cognitive tests did not correlate with lifestyle dementia risk scores.

The Five Lives assessment demonstrates high usability and reliability among older adults. These findings highlight the potential of digital assessments in dementia research and clinical practice, enabling improved accessibility and better monitoring of cognitive health on a larger scale than traditional in-person assessments.

When assessing individuals from diverse backgrounds, APA ethical principles emphasize the consideration of language and culture when selecting appropriate measures. Research among hearing, English-speaking individuals has shown the effects in identifying cognitive deficits when language, culture, and educational background are not considered in the selection and administration of measures (Ardilla, 2007). Among the Deaf community in the US, a minority group with a unique culture and language (American Sign Language: ASL), there have been few attempts to adapt existing English cognitive measures. Factors complicating this include research resources given the limited number of neuropsychologists and researchers who understand both the complexities of the measures as well as the linguistic and cultural factors within the Deaf population. The goal of the current project is to develop a culturally informed interpretation of a cognitive screening tool for appropriate use with older Deaf adults.

Item selection was informed by MMSE data from Dean et al. (2009) and methods utilized by Atkinson et al. (2015). Items selection occurred through consultation with three neuropsychologists and graduate peers with either native signing abilities or demonstrated ASL fluency, as well as Deaf identities, cultural affiliation and or community engagement. Selection considered the potential for translation errors, particularly related to equivalence of translation from a spoken modality to a signed. Items were categorized into the following domains: Orientation, Attention, Memory, Language, Executive Functioning, Visuospatial, and Performance Validity. Two native signers (Deaf interpreters) provided formal translation of the items. The measure was piloted with 20 deaf and hard of hearing (DHH) adult signers (ages M=41.10, SD=5.50, Range=31-48). Items were prerecorded to standardize the administration, which was shown to participants through the screenshare function of Zoom software.

The average performance was 100.80 (SD=3.91)/ 105 possible points. Within the memory domain, some errors, especially for word selection on delayed recall, were noted which may be related to sign choice and dialect. Additionally, with culture-specific episodic memory items, participants 35% of participants were unable to provide a correct answer with qualitative responses indicating this information may be more familiar to a subset of the Deaf community that had attended Gallaudet University in Washington, D.C. There was a significant positive relationship between ASL fluency, determined by the ASL-Comprehension Test, and performance on the cognitive screener (r(18)=.54, p=.01) while age of onset of deafness (r(18)=-.16, p=.51) and age of ASL acquisition (r(18)= .21, p=.37), were not significant.

Results of this preliminary project yielded a measure that benefited from inclusion of content experts in the field during the process of interpretation and translation. It appears appropriate for Deaf signers who are proficient in ASL. The pattern of correlations suggests the measure may be appropriate for use with fluent signers with experience in ASL acquisition. Further development of the measure should focus on appropriate items that address the diversity of the Deaf experience as well as continue to explore inclusive translation approaches.

Prior to the COVID-19 pandemic, our research group initiated a pediatric practice-based randomized trial for the treatment of childhood obesity in rural communities. Approximately 6 weeks into the originally planned 10-week enrollment period, the trial was forced to pause all study activity due to the COVID-19 pandemic. This pause necessitated a substantial revision in recruitment, enrollment, and other study methods in order to complete the trial using virtual procedures. This descriptive paper outlines methods used to recruit, enroll, and manage clinical trial participants with technology to obtain informed consent, obtain height and weight measurements by video, and maintain participant engagement throughout the duration of the trial.

The study team reviewed the IRB records, protocol team meeting minutes and records, and surveyed the site teams to document the impact of the COVID-19 shift to virtual procedures on the study. The IRB approved study changes allowed for flexibility between clinical sites given variations in site resources, which was key to success of the implementation.

All study sites faced a variety of logistical challenges unique to their location yet successfully recruited the required number of patients for the trial. Ultimately, virtual procedures enhanced our ability to establish relationships with participants who were previously beyond our reach, but presented several challenges and required additional resources.

Lessons learned from this study can assist other study groups in navigating challenges, especially when recruiting and implementing studies with rural and underserved populations or during challenging events like the pandemic.

A standardised multi-site approach to manage paediatric post-operative chylothorax does not exist and leads to unnecessary practice variation. The Chylothorax Work Group utilised the Pediatric Critical Care Consortium infrastructure to address this gap.

Over 60 multi-disciplinary providers representing 22 centres convened virtually as a quality initiative to develop an algorithm to manage paediatric post-operative chylothorax. Agreement was objectively quantified for each recommendation in the algorithm by utilising an anonymous survey. “Consensus” was defined as ≥ 80% of responses as “agree” or “strongly agree” to a recommendation. In order to determine if the algorithm recommendations would be correctly interpreted in the clinical environment, we developed ex vivo simulations and surveyed patients who developed the algorithm and patients who did not.

The algorithm is intended for all children (<18 years of age) within 30 days of cardiac surgery. It contains rationale for 11 central chylothorax management recommendations; diagnostic criteria and evaluation, trial of fat-modified diet, stratification by volume of daily output, timing of first-line medical therapy for “low” and “high” volume patients, and timing and duration of fat-modified diet. All recommendations achieved “consensus” (agreement >80%) by the workgroup (range 81–100%). Ex vivo simulations demonstrated good understanding by developers (range 94–100%) and non-developers (73%–100%).

The quality improvement effort represents the first multi-site algorithm for the management of paediatric post-operative chylothorax. The algorithm includes transparent and objective measures of agreement and understanding. Agreement to the algorithm recommendations was >80%, and overall understanding was 94%.

Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one.

Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period.

A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult.

Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.

Spinal muscular atrophy (SMA) is a devastating rare disease that affects individuals regardless of ethnicity, gender, and age. The first-approved disease-modifying therapy for SMA, nusinursen, was approved by Health Canada, as well as by American and European regulatory agencies following positive clinical trial outcomes. The trials were conducted in a narrow pediatric population defined by age, severity, and genotype. Broad approval of therapy necessitates close follow-up of potential rare adverse events and effectiveness in the larger real-world population.

The Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand the existing SMA dataset to capture items relevant to patient outcomes in a post-marketing environment. The CNDR SMA expanded registry is a longitudinal, prospective, observational study of patients with SMA in Canada designed to evaluate the safety and effectiveness of novel therapies and provide practical information unattainable in trials.

The consensus expanded dataset includes items that address therapy effectiveness and safety and is collected in a multicenter, prospective, observational study, including SMA patients regardless of therapeutic status. The expanded dataset is aligned with global datasets to facilitate collaboration. Additionally, consensus dataset development aimed to standardize appropriate outcome measures across the network and broader Canadian community. Prospective outcome studies, data use, and analyses are independent of the funding partner.

Prospective outcome data collected will provide results on safety and effectiveness in a post-therapy approval era. These data are essential to inform improvements in care and access to therapy for all SMA patients.