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Psychological effects of false-positive results in expanded newborn screening in China
Wen-Jun Tu1, Jian He, Hui Chen
1Center for Clinical Laboratory Development, Chinese Academy of Medical Science and Peking Union Medical College, Beijing, People's Republic of China. twjun8387@163.com
Insights
False-positive newborn screening results for metabolic disorders increase parental stress and anxiety, particularly for mothers. Improved communication and education can help mitigate these effects on families.
Area of Science:
- Genetics and Genomics
- Pediatrics
- Public Health
Background:
- Expanded newborn screening for metabolic disorders is increasing in China.
- False-positive results from newborn screening can lead to parental anxiety and affect family dynamics.
Purpose of the Study:
- To assess the impact of false-positive newborn screening results on parental stress, child health perceptions, and family relationships.
- To compare parents of infants with false-positive results to those with normal screening results.
Main Methods:
- A comparative study involving parents of infants with false-positive screening results (n=49) and normal screening results (n=42).
- Data collected through structured interviews using Likert scales, open/closed questions, and the Parenting Stress Index.
Main Results:
- Mothers in the false-positive group reported significantly higher rates of perceived extra parental care needs (21% vs 5%) and worry about child's future development (39% vs 10%) compared to the normal-screened group.
- Children with false-positive results were three times more likely to be hospitalized (27% vs 9%).
- Fathers did not show significant differences in reported worry between groups.
Conclusions:
- False-positive newborn screening results can negatively impact parental stress and the parent-child relationship.
- Enhanced parental education and communication regarding false-positive results are crucial for reducing anxiety and stress.
Objectives:
As more families participate expanded newborn screening for metabolic disorders in China, the overall number of false positives increases. Our goal was to assess the potential impact on parental stress, perceptions of the child's health, and family relationships.
Methods:
Parents of 49 infants with false-positive screening results for metabolic disorders in the expanded newborn screening panel were compared with parents of 42 children with normal screening results. Parents first completed structured interview using likert scales, closed and open questions. Parents also completed the parenting stress index.
Results:
A total of 88 mothers and 41 fathers were interviewed. More mothers in the false-positive group reported that their children required extra parental care (21%), compared with 5% of mothers in the normal-screened group (P<0.001). 39% of mothers in the false-positive group reported that they worry about their child's future development, compared with 10% of mothers in the normal-screened group (P<0.001). Fathers in the false-positive group did not differ from fathers in the normal-screened group in reporting worry about their child's extra care requirements, and their child's future development. Children with false-positive results compared with children with normal results were triple as likely to experience hospitalization (27%vs 9%, respectively; P<0.001).
Conclusions:
The results showing false-positive screening results may affect parental stress and the parent-child relationship. Parental stress and anxiety can be reduced with improved education and communication to parents about false-positive results.
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