"We have dealt with so much. There's more coming?": Improving Knowledge About Brain Health in Adults Living With Congenital Heart Disease.

Background: Significant advances in managing congenital heart disease (CHD) have occurred over the past few decades, resulting in a fast-growing adult patient population with distinct needs requiring urgent attention. Research has recently highlighted the prevalence of neurocognitive differences among adults living with CHD. Yet, there is a lack of knowledge about the perspectives of people living with CHD and family members/caregivers on brain health. We sought to explore their perspectives to guide future research and clinical endeavours. Methods: Using the principles of integrated knowledge translation and qualitative interpretive description, we conducted 2 focus groups with 7 individuals with CHD and their family members as part of a virtual forum on brain health in CHD. Data analysis followed the principles of interpretive description. Results: A lack of understanding about overall brain health and neurocognitive differences in adult CHD was identified. To increase overall knowledge about brain health, initiatives should (1) focus on the individual living with CHD, involving family members and peers; (2) use social media and health care encounters for knowledge exchange; and (3) ensure a "balancing act" in the information provided to avoid feelings of worry and uncertainty about the future while simultaneously empowering people living with CHD. Conclusions: There is a pressing need for better education about brain health among individuals living with CHD. Our findings can guide clinicians in developing programmes of care and (re)design health services that address the brain-heart axis and neurocognitive differences in CHD.

Contexte: Des progrès significatifs ont été réalisés au cours des dernières décennies dans la prise en charge des cardiopathies congénitales, et il en résulte une croissance rapide de la population des patients adultes dont les besoins distincts requièrent une attention urgente. Des études récentes ont mis en évidence la prévalence des différences neurocognitives chez les adultes atteints de cardiopathies congénitales (CC). À ce jour, les connaissances sur les points de vue des personnes qui vivent avec la CC, des membres de leurs familles et de leurs aidants au sujet de la santé du cerveau sont insuffisantes. Notre objectif était d'explorer ces points de vue afin d'orienter les recherches à venir et les initiatives cliniques. Méthodologie: En nous basant sur les approches d'application des connaissances intégrées et de description interprétative (DI) qualitative, nous avons organisé deux groupes de discussion avec 7 personnes atteintes de CC et les membres de leur famille, dans le cadre d'un forum virtuel sur la santé du cerveau dans les CC. L'analyse des données a été réalisée selon les principes de la DI. Résultats: Un manque de connaissances au sujet de la santé du cerveau en général et des différences neurocognitives chez les personnes atteintes de CC a été observé. Afin d'améliorer le niveau des connaissances générales sur la santé du cerveau, les initiatives doivent : (1) être centrées sur les personnes qui vivent avec la CC, avec la participation des membres de leur famille et d'autres patients; (2) tirer profit des médias sociaux et des rencontres en contexte de soins de santé pour le partage de connaissances; et (3) veiller à maintenir un équilibre, puisqu'il convient d'outiller les personnes atteintes de CC sans toutefois causer de sentiment d'inquiétude ou d'incertitude quant à l'avenir. Conclusions: Nous avons constaté le besoin urgent d'améliorer les connaissances des personnes qui vivent avec une CC au sujet de la santé du cerveau. Les résultats obtenus pourront guider les cliniciens dans l'élaboration de programmes de soins et la conception (ou la refonte) de services de soins de santé qui intègrent l'axe cerveau-cœur et les différences neurocognitives associées aux CC.

Three-month Practice Effect of the National Institutes of Health Toolbox Cognition Battery in Young Healthy Adults.

The National Institutes of Health Toolbox-Cognition Battery (NIHTB-CB) is a tablet-based cognitive assessment intended for individuals with neurological diseases of all ages. NIHTB-CB practice effects (PEs), however, need clarification if this measure is used to track longitudinal change. We explored the test-retest PEs on NIHTB-CB performance at 3 months in young healthy adults (n = 22). We examined corrected T-scores normalized for demographic factors and calculated PEs using Cohen's d. There were significant PEs for all NIHTB-CB composite scores and on 4/7 subtests. This work suggests the need to further assess NIHTB-CB PEs as this may affect the interpretation of study results incorporating this battery.

Evaluating High-Functioning Young Stroke Survivors with Cognitive Complaints.

BACKGROUND: The Montreal Cognitive Assessment (MoCA) is a commonly used cognitive outcome in stroke trials. However, it may be insufficiently sensitive to detect impairment in high-functioning stroke survivors. The National Institutes of Health (NIH) Toolbox Cognition Battery (NIHTB-CB), a 30-min comprehensive tablet-based cognitive assessment, may be a better choice to characterize cognitive issues in this cohort. METHODS: We compared MoCA and NIHTB-CB performance in young stroke survivors (18-55 years) with excellent functional outcomes (modified Rankin Scale 0-1) reporting subjective cognitive complaints to that of age-matched healthy controls. We recruited 53 stroke survivors and 53 controls. We performed a sensitivity analysis in those participants with normal MoCA scores (≥26). RESULTS: Median MoCA scores were not significantly different between stroke survivors (27.0 vs. 28.0) and healthy controls. Mean T scores for NIHTB-CB fluid (44.9 vs. 54.2), crystallized (53.8 vs. 60.0), and total cognition (49.1 vs. 58.4) components were significantly lower in stroke survivors compared to healthy controls (p < 0.001 for all). In participants scoring within normal range (≥26) on the MoCA, NIHTB-CB scores for all components remained significantly lower in stroke survivors. CONCLUSIONS: In young stroke survivors with excellent functional outcomes and subjective cognitive complaints, the NIHTB-CB, but not the MoCA, was able to detect differences in cognitive performance between stroke survivors and healthy controls. The NIHTB-CB may be a suitable outcome measure for cognition in clinical trials examining higher-functioning young stroke survivors.