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囊性纤维化新生儿筛查中假阳性结果的心理影响:为期两年的随访。

Psychological effects of false-positive results in cystic fibrosis newborn screening: a two-year follow-up.

机构信息

CF Center University Hospital, Rennes, France.

出版信息

J Pediatr. 2010 May;156(5):771-6, 776.e1. doi: 10.1016/j.jpeds.2009.12.003. Epub 2010 Feb 20.

Abstract

OBJECTIVE

To evaluate parental stress after a false-positive result at the time of the cystic fibrosis (CF) newborn screening (NBS), attributable to heterozygotism or persistent hypertrypsinemia.

STUDY DESIGN

A prospective study was conducted in 86 French families at 3, 12, and 24 months after NBS. A psychologist conducted interviews with a questionnaire, the Perceived Stress Scale, and the Vulnerable Child Scale.

RESULTS

Overall, 96.5% of parents said they had been anxious at the time of the sweat test. However, 86% felt entirely reassured 3 months after the test. The mean Perceived Stress Scale score did not differ from that observed in the French population. Mean Vulnerable Child Scale scores were high, associated with a low Parental Perception of Child Vulnerability. These results did not differ significantly at 1 and 2 years. In total, 86% to 100% of families no longer worried about CF. All parents stated that they would have the test performed again for another child.

CONCLUSIONS

CF NBS can lead to false-positive results, causing parental anxiety, which quickly decreases after a sweat test performed soon after the phone call.

摘要

目的

评估囊性纤维化(CF)新生儿筛查(NBS)时因杂合子或持续高胰蛋白酶血症导致假阳性结果后的父母压力。

研究设计

在 NBS 后 3、12 和 24 个月,对 86 个法国家庭进行了前瞻性研究。心理学家通过问卷调查、感知压力量表和易损儿童量表进行访谈。

结果

总体而言,96.5%的父母表示在进行汗液测试时感到焦虑。然而,86%的父母在测试后 3 个月完全放心。感知压力量表的平均得分与法国人群观察到的得分没有差异。易损儿童量表的平均得分较高,与父母对儿童易损性的感知较低有关。这些结果在 1 年和 2 年内没有显著差异。总的来说,86%至 100%的家庭不再担心 CF。所有父母都表示,如果有另一个孩子,他们会再次进行该测试。

结论

CF NBS 可能导致假阳性结果,导致父母焦虑,在电话通知后不久进行汗液测试后,这种焦虑很快就会减轻。

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