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Information for Readers 读者资讯
Pub Date : 2025-12-01 DOI: 10.1016/S2772-8129(25)00154-X
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引用次数: 0
Pan-Canadian Registry, Pan-System Disease: Rethinking Fontan Pathobiology 泛加拿大注册,泛系统疾病:重新思考方丹病理生物学
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.10.008
Ashish H. Shah MD, MD-Research (UK)
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引用次数: 0
Effect of the COVID-19 Pandemic on the Epidemiology of Kawasaki Disease in Canada 新冠肺炎疫情对加拿大川崎病流行病学的影响
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.07.001
Nina Butris MSc , Dominic Gangemi BSc , Pedrom Farid BMSc , Sunita O’Shea MA , Tanveer Collins MD , Nita Chahal NP, PhD , Rayan Rahman BSc , Vitor Guerra MD , Brian W. McCrindle MD, MSc , Cedric Manlhiot PhD

Background

COVID-19 substantially changed the epidemiology of Kawasaki disease (KD), with decreased incidence reported globally. We sought to determine its effect in Canada.

Methods

Pediatric admissions for KD (2004-2023) were identified through the Canadian Institute for Health Information. Clinical data for KD hospitalizations at the Hospital for Sick Children in Toronto (2016-June 2023) were manually reviewed.

Results

The incidence of KD was stable before the pandemic (22.5 cases/100,000 children aged 0-4 years/year, P = 0.19). There was a 30% reduction across all regions during the early pandemic period (2020-2021) (15.8 cases/100,000 children aged 0-4 years), with blunting of traditional winter peaks. In the summer of 2022, an atypical peak in the incidence of KD was observed, aligning with the Delta wave. Epidemiology returned to normal patterns in 2023-2024 (+7% vs prepandemic to 24.1 cases/100,000 children aged 0-4 years), with notable differences in Ontario and the Prairies. Patients diagnosed during the early pandemic were more likely to present with incomplete KD (odds ratio [OR] [95% confidence interval (CI)]: 4.84 [3.22-7.30], P = 0.008), respiratory symptoms (OR [95% CI]: 2.59 [1.70-7.30], P = 0.03), or abdominal symptoms (OR [95% CI]: 4.84 [3.15-7.44], P < 0.001). Those diagnosed in the late pandemic also presented with more incomplete KD (OR [95% CI]: 1.76 [1.16-2.66], P < 0.001), respiratory symptoms (OR [95% CI]: 1.70 [1.05-2.75], P < 0.001), or abdominal symptoms (OR [95% CI]: 2.53 [1.73-3.70], P < 0.001), albeit to a lesser extent, along with a shorter duration of fever before diagnosis (parameter estimate [95% CI]: −0.82 [−1.52; −0.12] days, P = 0.02) and higher odds of developing KD shock syndrome (OR [95% CI]: 4.66 [1.83-11.87], P = 0.001). Throughout the pandemic, odds of developing giant coronary aneurysms or admission to the intensive care unit remained similar.

Conclusions

The pandemic saw a substantial decrease in the incidence of KD with disrupted seasonality. Prepandemic epidemiologic patterns have returned. Patient presentations changed, but outcomes remained stable compared with the prepandemic period.
背景covid -19大大改变了川崎病(KD)的流行病学,全球发病率报告下降。我们试图确定它在加拿大的效果。方法通过加拿大卫生信息研究所(Canadian Institute for Health Information)确定2004-2023年儿科收治的KD患者。人工审查多伦多病童医院(2016年6月- 2023年6月)KD住院的临床数据。结果流行前KD发病率稳定(0 ~ 4岁儿童22.5例/10万/年,P = 0.19)。在大流行早期(2020-2021年),所有区域的病例减少了30%(每10万名0-4岁儿童15.8例),传统的冬季高峰减弱。在2022年夏季,观察到KD发病率的非典型高峰,与δ波一致。流行病学在2023-2024年恢复到正常模式(比大流行前增加7%,达到每10万名0-4岁儿童24.1例),安大略和大草原地区差异显著。在大流行早期诊断的患者更有可能出现不完全KD(优势比[OR][95%可信区间(CI)]: 4.84 [3.22-7.30], P = 0.008)、呼吸道症状(OR [95% CI]: 2.59 [1.70-7.30], P = 0.03)或腹部症状(OR [95% CI]: 4.84 [3.15-7.44], P < 0.001)。大流行晚期确诊的患者还表现出更多不完全KD (OR [95% CI]: 1.76 [1.16-2.66], P < 0.001)、呼吸道症状(OR [95% CI]: 1.70 [1.05-2.75], P < 0.001)或腹部症状(OR [95% CI]: 2.53 [1.73-3.70], P < 0.001),尽管程度较轻,同时诊断前发烧持续时间较短(参数估计[95% CI]: - 0.82 [- 1.52;−0.12]天,P = 0.02),发生KD休克综合征的几率更高(OR [95% CI]: 4.66 [1.83-11.87], P = 0.001)。在整个疫情期间,发生巨大冠状动脉瘤或进入重症监护病房的几率保持相似。结论本次大流行KD发病率显著下降,季节性中断。大流行前的流行病学模式已经恢复。患者的表现发生了变化,但与大流行前相比,结果保持稳定。
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引用次数: 0
Virtual Peer Mentoring for Adolescents With Congenital Heart Disease: A Mixed-Methods Study of the iPeer2Peer Program in the Transition to Adult Care 先天性心脏病青少年的虚拟同伴指导:过渡到成人护理的iPeer2Peer项目的混合方法研究
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.04.003
Tieghan Killackey RN, PhD , Sofia Olaizola BA , Fareha Nishat MPH , Richard Xi BSc , Navreet Gill RN, MN , Sandra Aiello RN , Rafael Alonso-Gonzalez MD, MSc, FESC , Conall Morgan MB, BCh, BaOFRCPC , Jennifer Graham BSc , Laura Veloso BSW, RPN , Cindy Desbiens , Charolette Desbiens , Jennifer N. Stinson RN, PhD , Sara Ahola Kohut PhD, CPsych

Background

Adolescents with congenital heart disease (AWCHD) experience various symptoms, which can restrict social interactions and negatively impact quality of life. iPeer2Peer is an evidence-based virtual peer mentorship program that has improved outcomes for youth in several chronic illness populations. This study sought to examine the feasibility and acceptability of delivering the iPeer2Peer program to AWCHD.

Methods

A convergent, parallel mixed methods pre-post study design was used. AWCHD (13-18 years old) were recruited and matched with trained peer mentors (18-25 years old). Matched dyads completed up to 10 video calls over 15 weeks. Primary outcomes focused on engagement and acceptability (ie, accrual, withdrawal, number of calls, and qualitative feedback). Secondary outcomes focused on estimates of program effectiveness for this population (ie, transition readiness, quality of life, and self-efficacy).

Results

Study results demonstrated a participant accrual rate of 25% (19 of 76) and an enrollment rate of 95% (18 of 19). Eighteen adolescents (mean age 16.5 years, 50% female) were enrolled with a range of CHD diagnoses. A total of 16 mentees completed the program, with 2 lost to follow-up. Adherence to the study protocol was strong, with 74% of mentees completing study measures at the end of the program (T2) and at 6 months after the program (T3). The average number of calls per pair was 7.25, and the average call length was 40.25 minutes. Transition readiness and self-management increased across program time points (with statistically significant improvement from baseline to 6-month follow-up) and aligned with qualitative results that illustrated the benefits of social support in the transition to adult care.

Conclusions

This study demonstrated that the iPeer2Peer program was acceptable in this population. AWCHD were highly engaged and described the benefits of peer support during the transition process. Clinical programs may consider implementing similarly structured peer mentorship initiatives as a unique form of psychosocial support during the transition adult care.
背景:患有先天性心脏病(AWCHD)的青少年会出现各种症状,这些症状会限制社会交往并对生活质量产生负面影响。iPeer2Peer是一个以证据为基础的虚拟同伴指导项目,它改善了一些慢性疾病人群中年轻人的预后。本研究旨在检验向AWCHD提供iPeer2Peer计划的可行性和可接受性。方法采用收敛、平行混合法进行前后研究设计。招募AWCHD(13-18岁)并与经过培训的同伴导师(18-25岁)配对。配对的二人组在15周内完成了多达10次视频通话。主要结果集中于参与和可接受性(即,应计额、退出、电话数量和定性反馈)。次要结果集中于对该人群的计划有效性的估计(即,过渡准备,生活质量和自我效能)。结果研究结果显示,参与者累计率为25%(76人中的19人),入组率为95%(19人中的18人)。18名青少年(平均年龄16.5岁,50%为女性)被纳入一系列冠心病诊断。共有16名学员完成了该项目,其中2人失去了随访。研究方案的依从性很强,74%的学员在项目结束(T2)和项目结束后6个月(T3)完成了研究措施。平均每对通话次数为7.25次,平均通话时长为40.25分钟。过渡准备和自我管理在项目时间点上有所增加(从基线到6个月的随访有统计学上的显着改善),并与定性结果一致,说明了社会支持在过渡到成人护理中的好处。结论本研究表明iPeer2Peer项目在该人群中是可接受的。AWCHD高度参与,并描述了在过渡过程中同伴支持的好处。临床项目可以考虑实施类似结构的同伴指导倡议,作为过渡成人护理期间独特的社会心理支持形式。
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引用次数: 0
Unique Left Ventricular Outflow Tract Tunnel Lesion With a Subaortic Membranous Pouch: A Case Report 独特的左心室流出道病变伴主动脉下膜袋1例
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.05.002
Nicolas Mourad BSc , Wisam Abozaid MD , Rebecca Liu BSc , Kathryn R. Armstrong MD , Ahamad Muhieldin MD
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引用次数: 0
Proof-of-Concept of Online-Only Enrollment for Collecting Longitudinal Patient-Reported Outcomes in Young Individuals With Congenital Heart Disease 收集年轻先天性心脏病患者纵向报告结果的在线注册概念验证
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.04.008
Laurence Watelle MD, Virginie Carrier MSc, Louis-Olivier Roy MSc, Marc-Olivier Pouliot, Frédéric Dallaire MD, PhD, Canadian Congenital and Pediatric Research Network

Background

The importance of patient-reported outcomes (PRO) in research in congenital heart disease (CHD) is being increasingly recognized. The resources needed for direct, in-clinic enrollment of study participants are important barriers. Social media enable new ways to interact with potential participants. We aimed to test the feasibility of collecting PRO without direct contact by the research team, with subsequent linkage with the Quebec CHD Registry.

Methods

We targeted all patients with CHD aged ≥14 years and parent of a child with CHD aged 5-17 years who received cardiac care in Québec. We disseminated a link to an online survey consisting of 4 PRO instruments on the internet and by displaying in pediatric cardiology waiting rooms. No direct contact by a study team was done. The data were subsequently linked to a clinical registry of >50,000 patients.

Results

A total of 160 people accessed the study, of whom 68 signed the consent form. A plateau of enrollment was quickly reached despite reminders. A total of 44 participants provided information for linkage to the clinical registry. The study had an over-representation of severe disease cases and lacked ethnic diversity. The retention rate at 1 year was 25%. Health-related quality of life was consistent with other CHD cohorts, and participants reported good satisfaction with life.

Conclusion

Recruiting participants with CHD without direct contact was ineffective at population level. Several factors may explain these results, including a weaker community network among participants than anticipated, apprehension about sharing personal information online, and difficulty effectively targeting participants on the internet.
研究背景:患者报告预后(PRO)在先天性心脏病(CHD)研究中的重要性日益被认识到。直接临床登记研究参与者所需的资源是重要的障碍。社交媒体提供了与潜在参与者互动的新方式。我们的目的是测试在没有研究小组直接接触的情况下收集PRO的可行性,随后与魁北克冠心病登记处联系。方法我们的研究对象是所有年龄≥14岁的冠心病患者,以及在曲海接受心脏护理的5-17岁冠心病患儿的父母。我们在网上和儿科心脏病候诊室里发布了一个由4台PRO仪器组成的在线调查链接。研究小组没有进行直接接触。这些数据随后与5万名患者的临床登记相关联。结果共有160人参加了本次研究,其中68人签署了同意书。尽管有人提醒,但入学人数很快就达到了平台期。共有44名参与者提供了与临床登记处联系的信息。该研究对严重疾病病例的代表性过高,缺乏种族多样性。1年的保留率为25%。与健康相关的生活质量与其他冠心病队列一致,参与者报告对生活有良好的满意度。结论招募没有直接接触的冠心病患者在人群水平上是无效的。有几个因素可以解释这些结果,包括参与者之间的社区网络比预期的弱,对在线分享个人信息的担忧,以及在互联网上有效定位参与者的困难。
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引用次数: 0
Aortoenteric Fistula Thirty-Seven Years After Repair for Midaortic Syndrome 主动脉中部综合征修复后37年主动脉肠瘘
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.04.007
Ali Fatehi Hassanabad MD, MSc , Toshiro Sembo MD , Kenton L. Rommens MD , Holly Smith MD, MBA
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引用次数: 0
Kawasaki Disease in Canada: The Impact of the COVID-19 Pandemic 加拿大川崎病:COVID-19大流行的影响
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.08.001
Shannon Oliver MBBS, Michael Khoury MD, FRCPC
{"title":"Kawasaki Disease in Canada: The Impact of the COVID-19 Pandemic","authors":"Shannon Oliver MBBS,&nbsp;Michael Khoury MD, FRCPC","doi":"10.1016/j.cjcpc.2025.08.001","DOIUrl":"10.1016/j.cjcpc.2025.08.001","url":null,"abstract":"","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":"4 6","pages":"Pages 353-355"},"PeriodicalIF":0.0,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145749979","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}
引用次数: 0
Addressing Survivorship Bias in Neurocognitive Outcomes After Early Complex Cardiac Surgery Using Clustering and Propensity Scores 利用聚类和倾向评分解决早期复杂心脏手术后神经认知结果的生存偏差
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.05.005
Morteza Hajihosseini PhD , Sara Amiri MSc , Charlene Robertson MD , Ari R. Joffe MD, FRCPC , Joseph Atallah MD, FRCPC , Gonzalo Garcia Guerra MD, FRCPC , Gwen Bond RN, MN , Irina Dinu PhD , Complex Pediatric Therapies Follow-up Program

Background

Although advances in cardiac surgery have increased survival rates from congenital heart disease, neurocognitive and functional outcomes have not significantly improved. We hypothesized that the absence of change in outcome scores may be due to survivorship bias. Our study aimed to address this by adjusting neurocognitive and functional outcome trend lines using k-mean clustering and propensity score (PS) methods.

Methods

Prospective follow-up was conducted on 266 children with single ventricle congenital heart disease who underwent the Norwood procedure at age ≤6 weeks at Stollery Children's Hospital, Edmonton, Alberta, between 1997 and 2016. PS and k-mean clustering methods were used to adjust outcomes for children with more complex conditions. Crude and adjusted trend lines for neurocognitive and functional outcomes were analyzed using multiple linear regression models.

Results

Multiple logistic regression determined age at surgery, total ventilation days, deep hypothermic circulatory arrest time, and total days chest open were significant in PS calculation. The adjusted linear time-trend analysis of neurocognitive and functional outcomes showed no change in Full Scale Intelligence Quotient and Visual Motor Integration scores. Although not robust to using the different PS adjustment methods, General Adaptive Composite scores may have decreased over time. Models with PS adjustment were not different from models without PS adjustment.

Conclusions

PS adjustment with clustering did not confirm survivorship bias. PS-adjusted models demonstrated stable Full Scale Intelligence Quotient and Visual Motor Integration scores over time, and inconsistent findings for General Adaptive Composite scores. Improved survival after more complex cardiac surgery was not associated with worse long-term neurocognitive outcomes.
背景:虽然心脏手术的进步提高了先天性心脏病的生存率,但神经认知和功能结局并没有显著改善。我们假设结果评分没有变化可能是由于生存偏倚。我们的研究旨在通过使用k-均值聚类和倾向评分(PS)方法调整神经认知和功能结果趋势线来解决这一问题。方法对1997 - 2016年在艾伯塔省埃德蒙顿斯托勒里儿童医院接受诺伍德手术的266例年龄≤6周的单心室先天性心脏病患儿进行前瞻性随访。PS和k-均值聚类方法用于调整病情更为复杂的儿童的结局。使用多元线性回归模型分析神经认知和功能结果的粗趋势线和调整趋势线。结果多元logistic回归确定手术年龄、总通气天数、深低温循环停搏时间、开胸总天数在PS计算中具有显著性。神经认知和功能结果的调整线性时间趋势分析显示,全量表智商和视觉运动整合得分没有变化。尽管使用不同的PS调整方法并不稳健,但通用自适应复合分数可能会随着时间的推移而下降。经过PS调整的模型与没有PS调整的模型没有差异。结论聚类sp校正不能证实生存偏倚。ps调整后的模型显示,随着时间的推移,全量表智商和视觉运动整合得分稳定,而一般适应性综合得分的结果不一致。更复杂的心脏手术后生存率的提高与更差的长期神经认知结果无关。
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引用次数: 0
Prevalence and Impact of Partial Anomalous Pulmonary Venous Connection in Turner Syndrome 特纳综合征部分肺静脉连接异常的患病率及影响
Pub Date : 2025-12-01 DOI: 10.1016/j.cjcpc.2025.06.004
Estelle Tenisch MD , Silvia Gigliotti MD , Jenny Lam MD , Kanetee Busiah MD , Peter Kopp MD , Florence Niel-Bütschi MD , Nelly Pitteloud MD , Judith Bouchardy MD , Nicole Sekarski MD , Magalie Ladouceur MD , Tobias Rutz MD

Background

Patients with Turner syndrome (TS) have a higher mortality than age-matched females, mainly due to cardiovascular disorders. Recently, an increased prevalence of partial anomalous pulmonary venous connection (PAPVC) was described in patients with TS. However, data on the clinical impact of PAPVC, that is, the need for surgical correction, are scarce. This study aimed at evaluating the prevalence and impact of congenital heart disease (CHD) with a focus on PAPVC in a TS population.

Methods

Patients with TS of all ages were included. Clinical data and reports of echocardiography, cardiac magnetic resonance (CMR), or computed tomography (CT) were retrospectively evaluated. CMR and CT were reviewed for PAPVC.

Results

Seventy-nine patients with TS were included (53 adults, 26 children [mean age 25 years, range 5-67 years]). Sixty-five patients underwent echocardiography, 41 CMR, and 3 CT. Cardiovascular disorders were present in 45% of patients and more frequently in karyotype monosomy X (76%), followed by 45, X mosaicism (39%), X structural rearrangements (18%), and other, unknown (16%) (P < 0.02). The encountered CHD lesions were bicuspid aortic valve (N = 16, 24%), PAPVC (N = 6, 8%), and aortic coarctation (N = 4, 6%). Nine (13.4%) patients underwent surgery, mainly for aortic coarctation repair (N = 4). Only 1 of the 6 patients with PAPVC needed surgery.

Conclusions

The spectrum of cardiovascular disorders in TS appears to be associated with the karyotype. Among CHD lesions, bicuspid aortic valve is the most prevalent, followed by PAPVC, although the latter seems to have a minor impact on outcome. However, PAPVC is systematically missed on echocardiography and classically found in patients with complete monosomy X.
特纳综合征(TS)患者的死亡率高于同龄女性,主要原因是心血管疾病。最近,在TS患者中,部分肺静脉异常连接(PAPVC)的患病率有所增加,然而,关于PAPVC的临床影响,即是否需要手术矫正的数据很少。本研究旨在评估先天性心脏病(CHD)的患病率和影响,重点关注TS人群中的PAPVC。方法纳入不同年龄的TS患者。回顾性评价超声心动图、心脏磁共振(CMR)或计算机断层扫描(CT)的临床资料和报告。复查CMR和CT检查PAPVC。结果纳入79例TS患者,其中成人53例,儿童26例,平均年龄25岁,5 ~ 67岁。65例患者行超声心动图检查,41例行CMR检查,3例行CT检查。45%的患者存在心血管疾病,核型单体X更常见(76%),其次是45,X镶嵌(39%),X结构重排(18%)和其他未知(16%)(P < 0.02)。遇到的冠心病病变为二尖瓣主动脉瓣(N = 16, 24%)、PAPVC (N = 6, 8%)和主动脉缩窄(N = 4, 6%)。9例(13.4%)患者接受手术,主要为主动脉缩窄修复(N = 4)。6例PAPVC患者中只有1例需要手术治疗。结论TS患者心血管疾病谱可能与核型有关。在冠心病病变中,二尖瓣主动脉瓣是最常见的,其次是PAPVC,尽管后者似乎对预后的影响较小。然而,超声心动图系统地遗漏了PAPVC,并且典型地在完全单体X患者中发现。
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引用次数: 0
期刊
CJC Pediatric and Congenital Heart Disease
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