"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.

Psychological Distress in Adults With Congenital Heart Disease Over the COVID-19 Pandemic.

Background This study sought to better understand the experiences of adults with congenital heart disease throughout the pandemic. Objectives were to determine (1) psychological distress before and throughout the pandemic; (2) changes in day-to-day functioning; and (3) the percentage of adults with congenital heart disease who experienced COVID-19 related symptoms, underwent testing, and tested positive. Methods and Results This was a cross-sectional study paired with retrospective chart review. A web-based survey was distributed to patients between December 2020 and January 2021. Patients reported on psychological distress across 5 categories (Screening Tool for Psychological Distress; depression, anxiety, stress, anger, and lack of social support), whether they experienced symptoms of COVID-19 and/or sought testing, and changes to their work and social behavior. Five hundred seventy-nine survey responses were received, of which 555 were linked to clinical data. Patients were aged 45±15 years. The proportion of patients reporting above-threshold values for all Screening Tool for Psychological Distress items significantly increased during the early pandemic compared with before the pandemic. Stress returned to baseline in December 2020/January 2021, whereas all others remained elevated. Psychological distress decreased with age, and women reported persistently elevated stress and anxiety compared with men during the pandemic. A consistent trend was not observed with regard to American College of Cardiology/American Heart Association anatomic and physiologic classification. Fifty (9%) patients lost employment because of a COVID-19-related reason. COVID-19 symptoms were reported by 145 (25%) patients, 182 (31%) sought testing, and 10 (2%) tested positive. Conclusions A substantial proportion of adults with congenital heart disease reported clinically significant psychological distress during the pandemic.