Psychosocial risk associated with newborn screening for cystic fibrosis: Parents' experience while awaiting the sweat-test appointment

Pediatrics

Volumn 115, Issue 6, 2005, Pages 1692-1703

  Tluczek, Audrey ^a,b   Koscik, Rebecca L ^a   Farrell, Philip M ^a   Rock, Michael J ^a  

^a UNIVERSITY OF WISCONSIN SCHOOL OF MEDICINE AND PUBLIC HEALTH   (United States)

^b UNIVERSITY OF WISCONSIN MADISON   (United States)

Author keywords

Cystic fibrosis; Newborn screening; Psychosocial risk

Indexed keywords

ARTICLE; CLINICAL ARTICLE; COGNITION; CONTROLLED STUDY; CYSTIC FIBROSIS; EMOTION; FEMALE; GENETIC PROCEDURES; HUMAN; INFANT; MALE; NEWBORN SCREENING; PARENTAL ATTITUDE; PRIORITY JOURNAL; SWEAT TEST; ADAPTIVE BEHAVIOR; ADULT; ANXIETY; ATTITUDE TO HEALTH; CHEMISTRY; COHORT ANALYSIS; GENETICS; HETEROZYGOTE; HOSPITAL ADMISSION; HOSPITAL MANAGEMENT; KNOWLEDGE; MENTAL STRESS; NEWBORN; NUCLEOTIDE SEQUENCE; PARENT; PSYCHOLOGICAL ASPECT; PSYCHOLOGY; RISK; SOCIAL SUPPORT; SWEAT; UNITED STATES;

CFTR PROTEIN, HUMAN; CHLORIDE; TRANSMEMBRANE CONDUCTANCE REGULATOR;

ADAPTATION, PSYCHOLOGICAL; ADULT; ANXIETY; APPOINTMENTS AND SCHEDULES; ATTITUDE TO HEALTH; CHLORIDES; COGNITION; COHORT STUDIES; CYSTIC FIBROSIS; CYSTIC FIBROSIS TRANSMEMBRANE CONDUCTANCE REGULATOR; DNA MUTATIONAL ANALYSIS; EMOTIONS; FEMALE; HETEROZYGOTE; HUMANS; INFANT; INFANT, NEWBORN; KNOWLEDGE; MALE; NEONATAL SCREENING; PARENTS; PSYCHOLOGY; RISK; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; SWEAT; WAITING LISTS; WISCONSIN;

EID: 27744538134     PISSN: 00314005     EISSN: 00314005     Source Type: Journal    
DOI: 10.1542/peds.2004-0275     Document Type: Article

References (32)

1. Sorenson JR, Levy HL, Mangione TW, Sepe SJ. Parental response to repeat testing of infants with "false positive" results in a newborn screening program. Pediatrics. 1984;73:183-187
2. Rothenberg MB, Sills EM. The PKU anxiety syndrome. J Am Acad Child Psychiatry. 1968;7:689-692
3. Hampton ML, Anderson J, Lavizzo BS, Bergman AB. Sickle cell "non-disease." Am J Dis Child. 1974;128:58-61
4. Bodegard G, Fyro K, Larsson A. Psychological reactions in 102 families with a newborn who has a falsely positive screening test for congenital hypothyroidism. Acta Paediatr Suppl. 1983;304:1-21
5. Bergman AB, Stamm SJ. The morbidity of cardiac nondisease in school children. N Engl J Med. 1967;276:1008-1013
6. Ciske DJ, Haavisto A, Laxova A, Zeng L, Rock MJ, Farrell PM. Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics. 2001;107:699-705
7. Tluczek A, Mischler E, Bowers B, et al. Psychological impact of false positive results when screening for cystic fibrosis. Pediatr Pulmonol. 1991;7(suppl):29-37
8. Tluczek A, Mischler E, Farrell PM, et al. Parents' knowledge of newborn screening and response to false-positive cystic fibrosis testing. J Dev Behav Pediatr. 1992;13:181-186
9. Johnson SB, Carmichael SK. At-risk for diabetes: coping with the news. J Clin Psychol Med Settings. 2000;7:69-78
10. Waisbren SE, Albers S, Amato S, et al. Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress. JAMA. 2003;290:2564-2572
11. Kosorok MR, Wei WH, Farrell PM. The incidence of cystic fibrosis. Stat Med. 1996;15:449-462
12. National Institutes of Health. Genetic testing for cystic fibrosis. NIH Consens Statement. 1997;15:1-37
13. Cystic Fibrosis Foundation. Available at: www.CFF.org
14. University of Wisconsin Department of Pediatrics. Available at: www.pediatrics.wisc.edu/patientcare/cf
15. Cystic Fibrosis Foundation. Cystic Fibrosis Foundation Patient Registry Annual Data Report 2002. Bethesda, MD: Cystic Fibrosis Foundation; 2003
16. American Academy of Pediatrics. Serving the family from birth to the medical home: a report from the Newborn Screening Task Force convened in Washington, DC, May 10-11, 1999. Pediatrics. 2000;106:383-427
17. Young SS, Kharrazi M, Pearl M, Cunningham G. Cystic fibrosis screening in newborns: results from existing programs. Curr Opin Pulm Med. 2001;7:427-433
18. Wagener JS, Farrell PM, Corey M. A debate on why my state (province) should or should not conduct newborn screening for cystic fibrosis (14th Annual North American Cystic Fibrosis Conference). Pediatr Pulm. 2001;32:385-396
19. Farrell PM. Improving the health of patients with cystic fibrosis through newborn screening. Adv Pediatr. 2000;47:79-115
20. Wilfond B. Newborn screening (NBS) and carrier detection for cystic fibrosis (CF). Presented at: 2003 Newborn Screening for Cystic Fibrosis Conference; November 20-21; Atlanta, GA
21. Charon JM. Symbolic Interactionism: An Introduction, an Interpretation, and Integration. 4th ed. Englewood Cliffs, NJ: Prentice-Hall; 1992
22. Bowers BJ. Grounded theory. In: Starter B, ed. Paths to Knowledge: Innovative Research Methods for Nursing. New York, NY: National League for Nursing; 1988:33-60
23. Chenitz WC, Swanson JM. From Practice to Grounded Theory: Qualitative Research in Nursing. Menlo Park, CA: Addison-Wesley; 1986
24. Strauss A. Qualitative Analysis for Social Scientists. New York, NY: Cambridge University Press; 1987
25. Radloff LS. The CES-D: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1:385-401
26. Shaw BF, Vallis TM, McCabe SB. The assessment of the severity and symptom pattern in depression. In: Beckham EE, Leber WR, ed. Handbook of Depression: Treatment, Assessment, and Research. Homewood, IL: Dorsey Press; 1985:372-407
27. O'Hara MW. Postpartum Depression: Causes and Consequences. New York, NY: Springer Verlag; 1994
28. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, DC: American Psychiatric Association; 1994
29. Goodman SH, Gotlib IH. Risk for psychopathology in the children of depressed mothers: a developmental model for understanding mechanisms of transmission. Psychol Rev. 1999;106:458-490
30. Mischler EH, Wilfond BS, Fost N, et al. Cystic fibrosis newborn screening: impact on reproductive behavior and implications for genetic counseling. Pediatrics. 1998;102:44-52
31. Rock MJ, Hoffman G, Laessig RH, Kopish GJ, Litsheim TJ, Farrell PM. Newborn screening for cystic fibrosis in Wisconsin: nine years experience with routine trypsinogen/DNA testing. J Pediatr Suppl. In press
32. Martin JA, Hamilton BE, Ventura SJ. Births: preliminary data for 2000. Natl Vital Stat Rep. 2001;49(5):1-20