Screening Center, Bavarian Health and Food Safety Authority (LGL), Veterinaerstrasse 2, 85764, Oberschleissheim, Germany.
Eur J Pediatr. 2019 Jun;178(6):803-809. doi: 10.1007/s00431-019-03343-6. Epub 2019 Mar 9.
In Germany, screening for cystic fibrosis (CF) is part of the newborn screening since September 2016. The risk of psychological harm due to false-positive screening results is a longstanding concern. We investigated the parents' perception of the CF screening process in Bavaria and the communication after positive screening results with a questionnaire. Until August 2018, 192 children went through a final diagnostic testing after a positive CF screening result, and 105 (54.7%) families completed the questionnaire. Of these, only 30 parents obtained information about the newborn screening by a physician, despite this being mandatory in Germany. Parents being informed by a CF specialist (28.6%) about the positive screening result were more satisfied with the given information (80.0 versus 50% informed by the maternity ward), and the delay until the final diagnostic testing was shorter. More than 3 days between the information about the screening result and the diagnostic testing was too long for 77.7% of the families.Conclusion: Performing final diagnostic testing with only short delays and receiving satisfactory information is important. Therefore, parents should be informed directly by a CF center about positive screening results and only when sweat testing is possible within the next days. What is Known: • The risk of psychological harm due to false-positive screening results is a longstanding concern. • Satisfactory information about the positive CF screening result seem to reduce the parental stress. What is New: • Parents being informed directly by a CF specialist were more satisfied with the given information and the delay until the final diagnostic testing was shorter. • Our data support the concept that parents should better be informed directly by a CF specialist about positive screening results and only when sweat testing is possible within the next days to reduce parental stress.
在德国，自 2016 年 9 月以来，囊性纤维化（CF）的筛查已成为新生儿筛查的一部分。由于假阳性筛查结果而导致的心理伤害风险是一个长期存在的问题。我们调查了巴伐利亚州父母对 CF 筛查过程的看法以及在阳性筛查结果后的沟通情况，使用问卷进行了调查。直到 2018 年 8 月，有 192 名儿童在 CF 筛查结果呈阳性后进行了最终诊断测试，其中有 105 个（54.7％）家庭完成了问卷。在这些家庭中，尽管德国有此规定，但仅有 30 名父母从医生那里获得了有关新生儿筛查的信息。父母从 CF 专家（28.6％）那里获得有关阳性筛查结果的信息会更满意（80.0％比从产科病房获得信息的父母更满意），并且最终诊断测试的延迟时间更短。对于 77.7％的家庭来说，从获得筛查结果到进行诊断测试之间超过 3 天的时间太长了。结论：尽快进行最终诊断测试并获得令人满意的信息非常重要。因此，应直接由 CF 中心通知父母阳性筛查结果，并且仅在接下来的几天内可以进行汗液测试时才通知。已知内容：•由于假阳性筛查结果而导致的心理伤害风险是一个长期存在的问题。•关于 CF 阳性筛查结果的令人满意的信息似乎可以减轻父母的压力。新内容：•父母直接由 CF 专家告知时，对所提供的信息更满意，并且进行最终诊断测试的延迟时间更短。•我们的数据支持这样的概念，即父母应更好地直接由 CF 专家告知阳性筛查结果，并且仅在接下来的几天内可以进行汗液测试时才通知，以减轻父母的压力。
