Bolduc Marie-Eve, Rennick Janet E, Gagnon Isabelle, Majnemer Annette, Brossard-Racine Marie
School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada.
Advances in Brain and Child Development Research Laboratory, Research Institute of the McGill University Health Centre, Montréal, Québec, Canada.
CJC Pediatr Congenit Heart Dis. 2022 Feb 2;1(1):3-10. doi: 10.1016/j.cjcpc.2021.11.002. eCollection 2022 Feb.
Developmental follow-up is central to the timely identification of delays in at-risk children. Throughout Canada, data are currently lacking on the follow-up of children with congenital heart disease (CHD) after open-heart surgery. The objective of this study was to describe current Canadian developmental follow-up practices and to explore barriers to optimal follow-up.
A cross-sectional study was implemented with health professionals involved with the developmental follow-up of children with CHD in the 8 specialized hospitals that perform pediatric open-heart surgery in Canada. A questionnaire collected descriptive information about the setting and current follow-up practices. In addition, an interview was conducted to explore what would be considered optimal developmental follow-up in Canada and identify potential barriers.
Four of the 8 tertiary care centres had a systematic developmental follow-up program that included screening and formal evaluation. These programs were only accessible to a subset of children with CHD identified to be at higher risk. Participants described current practices as suboptimal and aimed to develop a more systematic developmental follow-up program or expand an existing one. Participants emphasized the lack of human resources, financial supports, and limited dedicated time as major barriers to offering optimal follow-up care.
Current follow-up practices in Canada are considered suboptimal by health care specialists involved in treating children with CHD. These practices may fail to promptly identify children and adolescents with CHD who have developmental challenges. It is essential that we develop national recommendations to optimize the developmental follow-up practices in Canada for this high-risk population.
发育随访对于及时识别高危儿童的发育迟缓至关重要。在加拿大全国范围内，目前缺乏关于先天性心脏病（CHD）患儿心脏直视手术后随访情况的数据。本研究的目的是描述加拿大目前的发育随访做法，并探讨实现最佳随访的障碍。
对加拿大8家进行小儿心脏直视手术的专科医院中参与CHD患儿发育随访的卫生专业人员开展了一项横断面研究。通过问卷调查收集了关于机构设置和当前随访做法的描述性信息。此外，还进行了一次访谈，以探讨加拿大认为最佳的发育随访内容，并确定潜在障碍。
8家三级医疗中心中有4家设有系统的发育随访项目，包括筛查和正式评估。这些项目仅适用于部分被确定为高危的CHD患儿。参与者认为当前的做法并不理想，旨在制定更系统的发育随访项目或扩大现有项目。参与者强调，人力资源短缺、资金支持不足以及专门时间有限是提供最佳随访护理的主要障碍。
参与治疗CHD患儿的医疗保健专家认为，加拿大目前的随访做法并不理想。这些做法可能无法及时识别有发育挑战的CHD儿童和青少年。我们必须制定国家建议，以优化加拿大针对这一高危人群的发育随访做法。
