CJC Pediatric and Congenital Heart Disease最新文献

{"title":"Empowering the Future: Transitioning to Adulthood With Congenital Heart Disease","authors":"Philip Moons PhD, RN","doi":"10.1016/j.cjcpc.2023.09.007","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.09.007","url":null,"abstract":"","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 5","pages":"Pages 237-239"},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"67739346","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring Barriers and Facilitators to Indirect Cascade Screening for Familial Hypercholesteraemia in a Paediatric/Parent Population","authors":"Megan A. Dickson MSc ,&nbsp;Laura Zahavich MSc ,&nbsp;Janet Rush PhD ,&nbsp;Stacy Hewson MSc, MS ,&nbsp;David Chitayat MD, FABMG, FACMG, FCCMG, FRCPC ,&nbsp;Brian W. McCrindle MD, FRCPC, MPH, FACC ,&nbsp;Nita Chahal PhD, NP","doi":"10.1016/j.cjcpc.2023.05.006","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.05.006","url":null,"abstract":"<div><h3>Background</h3><p>Familial hypercholesteraemia (FH), an inherited disorder of cholesterol metabolism, has a prevalence of 1:250 and an associated 6- to 22-fold increased risk for cardiovascular disease. Despite the prevalence and availability of effective risk-reduction treatments, 90% of at-risk Canadians are undiagnosed. Indirect cascade screening from an index case is useful but the uptake is low (&lt;4%), suggesting that barriers may exist. Using the Theoretical Domains Framework, we sought to determine barriers and facilitators among parents of children diagnosed with FH that may influence the uptake of cascade screening among families.</p></div><div><h3>Methods</h3><p>A qualitative description approach was used for virtual interviews with 10 parents of children with FH, recruited from a regional Lipid Clinic in Toronto, Canada. Semistructured interviews were conducted. The data were analysed using a directed content analysis method.</p></div><div><h3>Results</h3><p>Five interconnecting themes were identified that captured both facilitators and barriers of indirect cascade screening: a high level of knowledge about FH after clinic attendance; parents’ surprise of their child’s diagnosis and ongoing worry; parents’ willingness to communicate the need for cholesterol screening; parents’ desire for educational materials, dictated by an external vs internal locus of control; and social and societal influences including the lack of awareness about FH in professional and public domains.</p></div><div><h3>Conclusions</h3><p>The themes identified will inform next steps in programme development. An urgent need was identified for strategies to educate the public and primary care providers about FH and blood cholesterol/genetic screening.</p></div>","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 5","pages":"Pages 211-218"},"PeriodicalIF":0.0,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"67739351","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Information for Readers","authors":"","doi":"10.1016/S2772-8129(23)00106-9","DOIUrl":"https://doi.org/10.1016/S2772-8129(23)00106-9","url":null,"abstract":"","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Page A1"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49751427","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluating a Telemedicine Video Game–Linked High-Intensity Interval Training Exercise Programme in Paediatric Heart Transplant Recipients","authors":"Christopher M. Spence MD ,&nbsp;Rae Foshaug ,&nbsp;Samira Rowland BSc ,&nbsp;Amanda Krysler MSc ,&nbsp;Jennifer Conway MD, MSc ,&nbsp;Simon Urschel MD ,&nbsp;Lori West MD, PhD ,&nbsp;Michael Stickland PhD ,&nbsp;Pierre Boulanger MSc, PhD ,&nbsp;John C. Spence PhD ,&nbsp;Michael Khoury MD","doi":"10.1016/j.cjcpc.2023.04.001","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.04.001","url":null,"abstract":"<div><p>Paediatric heart transplant recipients (HTRs) have reduced exercise capacity, physical activity (PA), health-related quality of life (HRQoL), and self-efficacy towards PA. Exercise interventions have demonstrated improvements in exercise capacity and functional status in adult HTRs, with a specific emerging interest in the role of high-intensity interval training (HIIT). Studies of exercise interventions in paediatric HTRs have been limited and nonrandomized to date. HIIT has not yet been evaluated in paediatric HTRs. We thus seek to evaluate the safety and feasibility of a randomized crossover trial of a 12-week, home-based, video game–linked HIIT intervention using a cycle ergometer with telemedicine and remote physiological monitoring capabilities (MedBIKE) in paediatric HTRs. The secondary objective is to evaluate the impact of the intervention on (1) exercise capacity, (2) PA, (3) HRQoL and self-efficacy towards PA, and (4) sustained changes in secondary outcomes at 6 and 12 months after intervention. After a baseline assessment of the secondary outcomes, participants will be randomized to receive the MedBIKE intervention (12 weeks, 36 sessions) or usual care. After the intervention and a repeated assessment, all participants will cross over. Follow-up assessments will be administered at 6 and 12 months after the MedBIKE intervention. We anticipate that the MedBIKE intervention will be feasible and safely yield sustained improvements in exercise capacity, PA, HRQoL, and self-efficacy towards PA in paediatric HTRs. This study will serve as the foundation for a larger, multicentre randomized crossover trial and will help inform exercise rehabilitation programmes for paediatric HTRs.</p></div>","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Pages 198-205"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49737722","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Long-term Outcome of Simultaneous Transcatheter Pulmonary and Tricuspid Valve-in-Valve Implantation in Ebstein Malformation With Pulmonary Insufficiency","authors":"Mohamed Al Nasef MD, FPCIS,&nbsp;Irfan Saleem MB,&nbsp;Ahmad Salim MD,&nbsp;Merna Atiyah MD,&nbsp;Khalid S. Al Najashi MD","doi":"10.1016/j.cjcpc.2023.03.003","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.03.003","url":null,"abstract":"","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Pages 206-209"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49725163","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Textile-based Wearable to Monitor Heart Activity in Paediatric Population: A Pilot Study","authors":"Nasim Montazeri Ghahjaverstan PhD ,&nbsp;Diana Balmer-Minnes MSc ,&nbsp;Behrad Taghibeyglou MSc ,&nbsp;Bastien Moineau PhD ,&nbsp;Gabriela Chaves PhD ,&nbsp;Milad Alizadeh-Meghrazi PhD ,&nbsp;Barbara Cifra MD ,&nbsp;Aamir Jeewa MB BCh ,&nbsp;Azadeh Yadollahi PhD","doi":"10.1016/j.cjcpc.2023.05.007","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.05.007","url":null,"abstract":"<div><h3>Background</h3><p>Cardiac monitoring for children with heart disease still employs common clinical techniques that require visits to hospital either in an ambulatory or inpatient setting. Frequent cardiac monitoring, such as heart rate monitoring, can limit children’s physical activity and quality of life. The main objective of this study is to evaluate the performance of a textile-based device (SKIIN) in measuring heart rate (HR) in different tasks: lying down, sitting, standing, exercising, and cooling down.</p></div><div><h3>Methods</h3><p>Twenty participants including healthy children and children with heart disease were included in this study. The difference between the HRs recorded by the SKIIN was compared with a reference electrocardiogram collection by normalized root mean squared error. Participants completed a questionnaire on their experience wearing the textile device with additional parental feedback on the textile device collected.</p></div><div><h3>Results</h3><p>Participants had the median age of 14 years (range: 10-17 years), with body mass index 23.1 ± 3.8 kg/m² and body surface area 1.70 ± 0.25 m². The HR recorded by SKIIN and reference system significantly changes between tasks (<em>P</em> &lt; 0.001), while not significantly different from each other (<em>P</em> &gt; 0.05). The normalized root mean squared error was 3.8% ± 3.0% and 3.6% ± 3.7% for healthy and the heart disease groups, respectively. All participants found the textile device non-irritating and easy to wear.</p></div><div><h3>Conclusions</h3><p>This study provides proof of concept that HR can be robustly and conveniently monitored by smart textiles, with similar accuracy to standard-of-care devices.</p></div>","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Pages 187-195"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49725184","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advancing Wearable Technology for Monitoring Heart Activity in Paediatric Populations","authors":"Colin K. Drummond PhD, MBA ,&nbsp;Animesh Tandon MD, MS","doi":"10.1016/j.cjcpc.2023.06.003","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.06.003","url":null,"abstract":"","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Pages 196-197"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49724632","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation of a Video-Based Education Intervention for Parents of Children Undergoing Fontan Surgery: A Cluster Randomized Controlled Trial","authors":"Julie K. Rehman RN, MN ,&nbsp;Gwen R. Rempel RN, PhD ,&nbsp;Elina Williams RN, BScN, PMP ,&nbsp;Leanne Meakins NP, MN ,&nbsp;Mary E. Bauman NP, MN ,&nbsp;M. Patricia Massicotte MD ,&nbsp;Roberta Davis BA ,&nbsp;Judy Dahl CCLS ,&nbsp;Andrew S. Mackie MD, SM","doi":"10.1016/j.cjcpc.2023.05.003","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.05.003","url":null,"abstract":"<div><h3>Background</h3><p>Fontan surgery is performed at 2-4 years of age and is the third planned surgical intervention for children with a univentricular heart. Major challenges for children and parents after Fontan include (a) psychological distress, (b) prolonged pleural drainage, and (c) the need for postoperative anticoagulation. The aim of this study was to evaluate a pre-Fontan video-based intervention for parents to address these challenges.</p></div><div><h3>Methods</h3><p>This study is a single-centre mixed-methods cluster randomized controlled trial. The intervention consisted of 3 brief whiteboard videos offered online from preadmission clinic to 1 month postoperatively. The parent’s State Trait Anxiety Inventory score and the child’s Post Hospital Behaviour Questionnaire score were measured 1 week and 1 month postoperatively. Semistructured interviews were conducted to obtain parental feedback on the videos.</p></div><div><h3>Results</h3><p>We enrolled 26 children (13 female patients; 16 intervention group) and 1 parent per child. Mean State Trait Anxiety Inventory scores were similar between groups at both 1 week (52.8 vs 55.5, <em>P</em> = 0.25) and 1 month postoperatively (50.9 vs 53.9, <em>P</em> = 0.25). Post Hospital Behaviour Questionnaire scores were in the maladaptive range but did not differ between groups. Parents agreed or strongly agreed that the videos were helpful but should be provided earlier in the preoperative process. The main value of the videos was recognized as being a method for standardizing information provided to parents.</p></div><div><h3>Conclusions</h3><p>A video-based education intervention did not impact State Trait Anxiety Inventory or Post Hospital Behaviour Questionnaire scores. However, the majority of parents agreed that the videos were helpful.</p></div>","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Pages 176-186"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49762477","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Right Ventricular Function and Right Ventricular-Vascular Coupling Assessment After Coarctation Repair in Adults","authors":"Luc L. Mertens MD, PhD","doi":"10.1016/j.cjcpc.2023.07.001","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.07.001","url":null,"abstract":"","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Pages 174-175"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49762471","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prognostic Role of Tricuspid Annular Plane Systolic Excursion/Right Ventricular Systolic Pressure Ratio in Coarctation of Aorta","authors":"Marwan Ahmed MBBS,&nbsp;Snigdha Karnakoti MBBS,&nbsp;Omar Abozied MBBS,&nbsp;Sriharsha Kandlakunta MBBS,&nbsp;Ahmed Younis MBBS,&nbsp;Alexander C. Egbe MD, MPH, MS","doi":"10.1016/j.cjcpc.2023.05.001","DOIUrl":"https://doi.org/10.1016/j.cjcpc.2023.05.001","url":null,"abstract":"<div><h3>Background</h3><p>Right ventricular (RV) systolic dysfunction and pulmonary hypertension are associated with mortality in adults with coarctation of aorta (COA). The tricuspid annular plane systolic excursion/RV systolic pressure (TAPSE/RVSP) ratio is a validated noninvasive tool for the assessment of RV-pulmonary arterial (RV-PA) coupling in patients with PA hypertension, but similar data are lacking in adults with COA. The purpose of this study was to assess the relationship between the TAPSE/RVSP ratio and outcomes in this population.</p></div><div><h3>Methods</h3><p>A retrospective cohort study of adults with repaired COA was performed. RV systolic dysfunction was defined as RV free wall strain ≥−24% at baseline, whereas new-onset RV systolic dysfunction was defined RV free wall strain ≥−24% during follow-up.</p></div><div><h3>Results</h3><p>Of 661 patients, TAPSE, RVSP, and TAPSE/pulmonary artery systolic pressure ratio were 22 ± 6 mm, 34 ± 12 mm Hg, and 0.71 (0.48-0.89) mm/mm Hg, respectively. Of 661 patients, 152 (23%) had RV systolic dysfunction at baseline, and TAPSE/RVSP &lt;0.43 mm/mm Hg was the optimal threshold to detect RV systolic dysfunction. TAPSE/RVSP &lt;0.43 mm Hg was associated with RV systolic dysfunction (adjusted odds ratio: 3.11 [1.83-6.19], <em>P</em> = 0.004). Of 509 patients with normal RV systolic function, 42 (8%) and 36 (7%) developed new-onset RV systolic dysfunction and new-onset right heart failure, respectively, during follow-up. TAPSE/RVSP &lt;0.43 mm/mm Hg was associated with new-onset RV systolic dysfunction (adjusted hazard ratio: 1.95 [1.46-2.77], <em>P</em> = 0.008) and new-onset right heart failure (adjusted hazard ratio: 0.81 [0.68-0.92], <em>P</em> = 0.005).</p></div><div><h3>Conclusions</h3><p>The TAPSE/RVSP ratio can potentially be used to identify patients at risk for new-onset RV systolic dysfunction and right heart failure and provide opportunity for proactive interventions to prevent adverse outcomes.</p></div>","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"2 4","pages":"Pages 167-173"},"PeriodicalIF":0.0,"publicationDate":"2023-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49762476","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}