Changing their minds with time: A comparison of hypothetical and actual reproductive behaviors in parents of children with cystic fibrosis

Pediatrics

Volumn 118, Issue 3, 2006, Pages

  Sawyer, Susan M ^a,b,c,d   Cerritelli, Belinda ^a,b,d   Carter, Lucy S ^a,b,c   Cooke, Mary ^a   Glazner, Judith A ^a   Massie, John ^a,d  

^a ROYAL CHILDREN'S HOSPITAL   (Australia)

^b ROYAL CHILDREN'S HOSPITAL   (Australia)

^c UNIVERSITY OF MELBOURNE   (Australia)

^d MURDOCH CHILDREN'S RESEARCH INSTITUTE   (Australia)

Author keywords

Cystic fibrosis; Genetic counseling; Newborn screening; Prenatal diagnosis; Reproductive choices; Termination of pregnancy

Indexed keywords

ARTICLE; CHILD; CONTROLLED STUDY; CYSTIC FIBROSIS; FEMALE; FOLLOW UP; GENETIC COUNSELING; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; NEWBORN SCREENING; PARENTAL ATTITUDE; PREGNANCY TERMINATION; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; QUESTIONNAIRE; SEXUAL BEHAVIOR; ATTITUDE TO HEALTH; COMPARATIVE STUDY; DECISION MAKING; GENETICS; INDUCED ABORTION; INFERTILITY THERAPY; MALE; NEWBORN; PREGNANCY; PRESCHOOL CHILD; PROSPECTIVE STUDY; UTILIZATION REVIEW;

ABORTION, INDUCED; ATTITUDE TO HEALTH; CHILD; CHILD, PRESCHOOL; CYSTIC FIBROSIS; DECISION MAKING; FEMALE; GENETIC COUNSELING; HEALTH SURVEYS; HUMANS; INFANT, NEWBORN; MALE; NEONATAL SCREENING; PREGNANCY; PRENATAL DIAGNOSIS; PROSPECTIVE STUDIES; REPRODUCTIVE TECHNIQUES;

EID: 33749079236     PISSN: 00314005     EISSN: 02105721     Source Type: Journal    
DOI: 10.1542/peds.2005-2551     Document Type: Article

References (25)

1. Farrell PM, Kosorok MR, Laxova A, et al. Nutritional benefits of neonatal screening for cystic fibrosis. Wisconsin Cystic Fibrosis Neonatal Screening Study Group. N Engl J Med. 1997;337:963-969
2. Farrell PM, Kosorok MR, Rock MJ, et al. Early diagnosis of cystic fibrosis through neonatal screening prevents severe malnutrition and improves long term growth. Wisconsin Cystic Fibrosis Neonatal Screening Study Group. Pediatrics. 2001;107:1-13
3. Wildhagen MF, ten Kate LP, Habbema JDF. Screening for cystic fibrosis and its evaluation. Br Med Bull. 1998;54:857-875
4. Merelle ME, Nagelkerke AF, Lees CM, Dezateux C. Newborn screening for cystic fibrosis. Cochrane Database Syst Rev. 2001;(3):CD 001402
5. Wilfond B, Rothenberg LS. Ethical issues in cystic fibrosis newborn screening: from data to public health policy. Curr Opin Pulm Med. 2002;8:529-534
6. 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
7. Dudding T, Wilcken B, Burgess B, Hambly J, Turner G. Reproductive decisions after neonatal screening identifies cystic fibrosis. Arch Dis Child Fetal Neonatal Ed. 2000;82:F124-F127
8. Lane B, Harris R, Harris H. Neonatal screening for cystic fibrosis: early diagnosis allows option of prenatal diagnosis in subsequent pregnancies. BMJ. 1998;317:411
9. Scotet V, de Braekeleer M, Roussey M, et al. Neonatal screening for cystic fibrosis in Brittany, France: assessment of 10 years' experience and impact on prenatal diagnosis. Lancet. 2000;356:789-794
10. Al-Jader LN, Goodchild MC, Ryley HC, Harper PS. Attitudes of parents of cystic fibrosis children toward neonatal screening and antenatal diagnosis. Clin Genet. 1990;38:460-465
11. Helton JL, Harmon RJ, Robinson N, Accurso FJ. Parental attitudes toward newborn screening for cystic fibrosis. Pediatr Pulmonol Suppl. 1991;7:23-28
12. Wertz DC, Rosenfield JM, Janes SR, Erbe RW. Attitudes toward abortion among parents of children with cystic fibrosis. Am J Public Health. 1991;81:992-996
13. Wertz DC, Janes SR, Rosenfield JM, Erbe RW. Attitudes toward the prenatal diagnosis of cystic fibrosis: factors in decision making among affected families. Am J Hum Genet. 1992;50:1077-1085
14. Jedlicka-Kohler I, Gotz M, Eichler I. Utilization of prenatal diagnosis for cystic fibrosis over the past seven years. Pediatrics. 1994;94:13-16
15. Polnay JC, Davidge A, Lyn UC, Smyth AR. Parental attitudes: antenatal diagnosis of cystic fibrosis. Arch Dis Child. 2002;87:284-286
16. Evers-Kiebooms G, Denayer L, van den Berghe H. A child with cystic fibrosis: 11. Subsequent family planning decisions, reproduction and use of prenatal diagnosis. Clin Genet. 1990;37:207-215
17. Mischler EH, Wilfond BS, Fost N, et al. Cystic fibrosis screening: impact on reproductive behaviour and implications for genetic counselling. Pediatrics. 1998;102:44-52
18. Boue J, Muller F, Simon-Bouy B, Faure C, Boue A. Consequences of prenatal diagnosis of cystic fibrosis on the reproductive attitudes of parents of affected children. Prenat Diagn. 1991;11:209-214
19. Borgo G, Fabiano T, Perobelli S, Mastella G. Effect of prenatal diagnosis on the reproductive behaviour of families at risk for cystic fibrosis. A cohort study. Prenat Diagn. 1992;12:821-830
20. Sawyer SM, Glazner J. What follows neonatal screening? An evaluation of an assessment and education program for parents of newly diagnosed infants with cystic fibrosis. Pediatrics. 2004;114:411-416
21. Massie J, Clements B, Australasian Paediatric Respiratory Group. The diagnosis of cystic fibrosis after newborn screening: 20 years and 5 million babies later. Pediatr Pulmonol. 2005;39:392-401
22. Wheeler PG, Smith R, Dorkin H, Parad RB, Comeau AM, Bianchi DW. Genetic counselling after implementation of statewide cystic fibrosis newborn screening: two years' experience in one medical centre. Genet Med. 2001;3:411-415
23. Comeau AM, Parad R, Gerstle R, et al. Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result. J Pediatr. 2005;147:S98-S100
24. Scott DA, Valery PC, Boyle FM, Bain CJ. Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma. Med J Aust. 2002;177:507-510
25. Kreicbergs U, Valdimarsdottir U, Steineck G, Henter JI. A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer. Lancet. 2004;364:787-789