Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
Faculty of Kinesiology, Sport, and Recreation, University of Alberta, Edmonton, Alberta, Canada.
Cardiol Young. 2020 May;30(5):692-697. doi: 10.1017/S1047951120000803. Epub 2020 Apr 14.
We evaluated a cohort of 35 children diagnosed with long QT syndrome, catecholaminergic polymorphic ventricular tachycardia, hypertrophic cardiomyopathy, or arrhythmogenic right ventricular cardiomyopathy with regard to physical and psychosocial well-being.
Patients wore an accelerometer to record their time involved in moderate- to vigorous-intensity physical activity and completed the Pediatric Quality of Life Inventory and the Pediatric Cardiac Quality of Life Inventory. Parents were also asked to describe if their child had changed their physical activity because of their diagnosis and how difficult and upsetting it was for the child to adapt to the physical activity recommendations.
Patients were involved in less moderate- to vigorous-intensity physical activity per day (35 min/day versus 55 min/day) and had lower Pediatric Quality of Life Inventory total health scores (79 versus 84) compared to normative data. Overall, 51% of the cohort modified their physical activity in some way because of their diagnosis and changing physical activity was associated with lower Pediatric Quality of Life Inventory and Pediatric Cardiac Quality of Life Inventory scores.
Our cohort was involved in less moderate- to vigorous-intensity physical activity and had lower Pediatric Quality of Life Inventory total health scores compared to normative paediatric data. Modifying one's physical activity was associated with worse health-related quality of life scores, highlighting a vulnerable sub-group of children. These findings are useful for families and healthcare professionals caring for children who are adjusting to a new cardiac diagnosis of an inherited arrhythmia or cardiomyopathy.
我们评估了一组 35 名患有长 QT 综合征、儿茶酚胺多形性室性心动过速、肥厚型心肌病或致心律失常性右室心肌病的儿童，以评估他们的身体和社会心理福祉。
患者佩戴加速度计记录他们进行中等到剧烈强度体育活动的时间，并完成了儿童生活质量量表和儿童心脏生活质量量表。还要求家长描述孩子是否因为诊断而改变了他们的体育活动，以及孩子适应体育活动建议的难易程度和困扰程度。
与正常数据相比，患者每天参与的中等到剧烈强度体育活动较少（35 分钟/天与 55 分钟/天），且儿童生活质量量表总健康评分较低（79 分与 84 分）。总体而言，51%的患者因诊断而以某种方式改变了他们的体育活动，改变体育活动与儿童生活质量量表和儿童心脏生活质量量表评分较低有关。
与正常儿科数据相比，我们的队列参与的中等到剧烈强度体育活动较少，且儿童生活质量量表总健康评分较低。改变一个人的体育活动与更差的健康相关生活质量评分相关，突出了一个脆弱的儿童亚组。这些发现对于正在适应遗传性心律失常或心肌病新心脏诊断的儿童的家庭和医疗保健专业人员很有用。
