Stefferud Marte Johanne, Einang Anne Grethe, Klingenberg Claus
Tidsskr Nor Laegeforen. 2021 Sep 21;141. doi: 10.4045/tidsskr.21.0024. Print 2021 Sep 28.
Children and adolescents with Down syndrome have a comprehensive need for follow-up in the primary and specialist healthcare services.
In June 2019, we published a questionnaire on the Facebook group of the Norwegian Network for Down syndrome. The purpose was to investigate user experiences among parents of children and adolescents with Down syndrome in the age group 0-20 years, in their encounter with the healthcare services.
We received 174 responses. Those most satisfied were parents of children who received follow-up for secondary diagnoses such as vision problems, heart defects and endocrine disorders. Those least satisfied were parents of children with problems associated with behaviour, sleep and puberty. Approximately 6 out of 10 parents reported no negative experiences in their encounter with the healthcare services, but 29/161 (18 %) reported that the diagnosis of Down syndrome had contributed to treatment failure by the paediatrician or in the child rehabilitation service.
The study indicates a need for improved follow-up of children and adolescents with Down syndrome, both in the primary and specialist healthcare services.
唐氏综合征儿童和青少年在初级和专科医疗服务中需要全面的随访。
2019年6月，我们在挪威唐氏综合征网络的脸书群组上发布了一份问卷。目的是调查0至20岁唐氏综合征儿童和青少年的父母在接受医疗服务时的用户体验。
我们收到了174份回复。最满意的是那些孩子接受了视力问题、心脏缺陷和内分泌紊乱等二级诊断随访的父母。最不满意的是那些孩子存在行为、睡眠和青春期相关问题的父母。大约十分之六的父母报告在接受医疗服务时没有负面经历，但29/161（18%）的父母报告说，唐氏综合征的诊断导致儿科医生或儿童康复服务出现治疗失败的情况。
该研究表明，在初级和专科医疗服务中，需要改善对唐氏综合征儿童和青少年的随访。
