Psychological Effects of False-Positive Results in Cystic Fibrosis Newborn Screening: A Two-Year Follow-Up

被引:42
作者
Beucher, Julie [1 ]
Leray, Emmanuelle [2 ]
Deneuville, Eric [1 ]
Roblin, Monique [1 ]
Pin, Isabelle [3 ]
Bremont, Francois [4 ]
Turck, Dominique [5 ]
Ginies, Jean-Louis [6 ]
Foucaud, Pascal [7 ]
Rault, Gilles [8 ]
Derelle, Jocelyne [9 ]
David, Valerie [10 ]
Journel, Hubert [11 ]
Marchand, Sophie [12 ]
Veillard, David [2 ]
Roussey, Michel
机构
[1] CF Ctr Univ Hosp, Rennes, France
[2] Univ Hosp, Dept Publ Hlth, Rennes, France
[3] CF Ctr Grenoble, Grenoble, France
[4] CF Ctr Toulouse, Toulouse, France
[5] CF Ctr Lille, Lille, France
[6] CF Ctr Angers, Angers, France
[7] CF Ctr Versailles, Versailles, France
[8] CF Ctr Roscoff, Roscoff, France
[9] CF Ctr Nancy, Nancy, France
[10] CF Ctr Nantes, Nantes, France
[11] CF Ctr Vannes, Vannes, France
[12] CF Ctr Tours, Tours, France
关键词
PARENTS; PROGRAM; SWEAT; CF;
D O I
10.1016/j.jpeds.2009.12.003
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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. (J Pediatr 2010; 156: 771-6).
引用
收藏
页码:771 / U121
页数:7
相关论文
共 24 条
  • [1] BRUCHONSCHWEITZ, 2002, PSYCHOL SANTE MODELE, P130
  • [2] Genetic counseling and neonatal screening for cystic fibrosis: An assessment of the communication process
    Ciske, DJ
    Haavisto, A
    Laxova, A
    Rock, LZM
    Farrell, PM
    [J]. PEDIATRICS, 2001, 107 (04) : 699 - 705
  • [3] The false-positive in universal newborn hearing screening
    Clemens, CJ
    Davis, SA
    Bailey, AR
    [J]. PEDIATRICS, 2000, 106 (01) : E7
  • [4] A GLOBAL MEASURE OF PERCEIVED STRESS
    COHEN, S
    KAMARCK, T
    MERMELSTEIN, R
    [J]. JOURNAL OF HEALTH AND SOCIAL BEHAVIOR, 1983, 24 (04) : 385 - 396
  • [5] CROSSLEY JR, 1979, LANCET, V1, P472
  • [6] GIBSON LE, 1959, PEDIATRICS, V23, P545
  • [7] Green M, 1986, Pediatr Rev, V8, P75, DOI 10.1542/pir.8-3-75
  • [8] Expanded newborn screening for biochemical disorders: The effect of a false-positive result
    Gurian, Elizabeth A.
    Kinnamon, Daniel D.
    Henry, Judith J.
    Waisbren, Susan E.
    [J]. PEDIATRICS, 2006, 117 (06) : 1915 - 1921
  • [9] Hayeems R Z, 2008, J Genet Couns, V17, P538, DOI 10.1007/s10897-008-9180-1
  • [10] HELTON JL, 1991, PEDIATR PULM, P23