Wolfe Kelly R, Kelly Sarah L, Liptzin Deborah R, Brigham Dania, Rafferty Carey, Younoszai Adel K, Di Maria Michael V
Neuroscience Institute, Section of Pediatric Neurology, Department of Pediatrics, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO, USA.
Heart Institute, Section of Pediatric Cardiology, Department of Pediatrics, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO, USA.
J Patient Exp. 2020 Dec;7(6):1384-1390. doi: 10.1177/2374373520904214. Epub 2020 Mar 2.
Children with single-ventricle heart disease (SVHD) are at risk for morbidity across multiple organ systems. A single-ventricle multidisciplinary clinic (SVMDC) may address complex health-care needs by providing access to, and coordination among, pediatric subspecialties. However, the patient and family experience of multidisciplinary care for SVHD remains unexplored. We e-mailed a 26-question survey to families after an SVMDC visit, which included evaluation with subspecialists from cardiology, pulmonology, gastroenterology, neuropsychology, and pediatric psychology, as well as social activities during clinic. Responses were anonymized to protect privacy, and data were analyzed quantitatively and qualitatively. Over 3 years, 22% (27/122) of families completed the survey. Overall, families' experiences were positive, with 100% reporting that they would recommend the SVMDC to others. Qualitative themes emerged regarding logistics, multidisciplinary care, key takeaways from clinic, and connection-making with other families. A multidisciplinary clinic demonstrated overall acceptability and perceived benefit to families of children with SVHD. Considerations for mixed experiences regarding financial commitment and connection-making among parents are discussed, as are the benefits of the synergy achieved through multidisciplinary care.
患有单心室心脏病（SVHD）的儿童存在多器官系统发病的风险。单心室多学科诊所（SVMDC）可以通过提供儿科专科服务并进行协调，来满足复杂的医疗保健需求。然而，针对SVHD的多学科护理中患者及其家庭的体验仍未得到探索。在SVMDC就诊后，我们通过电子邮件向家庭发送了一份包含26个问题的调查问卷，其中包括来自心脏病学、肺病学、胃肠病学、神经心理学和儿科心理学等专科医生的评估，以及诊所期间的社交活动。为保护隐私，回复进行了匿名处理，并对数据进行了定量和定性分析。在3年多的时间里，22%（27/122）的家庭完成了调查。总体而言，家庭的体验是积极的，100%的家庭表示会向他人推荐SVMDC。出现了关于后勤、多学科护理、诊所的关键收获以及与其他家庭建立联系等方面的定性主题。多学科诊所对患有SVHD的儿童家庭总体上具有可接受性和感知益处。讨论了关于经济投入和父母之间建立联系的不同体验的相关考虑因素，以及多学科护理所实现的协同效应的益处。
