Newborn screening for cystic fibrosis — The parent perspective

Journal of Cystic Fibrosis

Volumn 15, Issue 4, 2016, Pages 443-451

  Rueegg, Corina S ^a,b   Barben, Jürg ^c   Hafen, Gaudenz M ^d   Moeller, Alexander ^e   Jurca, Maja ^a   Fingerhut, Ralph ^e   Kuehni, Claudia E ^a  

^a UNIVERSITY OF BERN   (Switzerland)

^b UNIVERSITY OF LUCERNE   (Switzerland)

^c Kantonsspital St Gallen   (Switzerland)

^d LAUSANNE UNIVERSITY HOSPITAL   (Switzerland)

^e UNIVERSITY CHILDREN S HOSPITAL   (Switzerland)

Author keywords

Cystic fibrosis; False positives; Newborn screening; Parents

Indexed keywords

TRYPSINOGEN; CYSTIC FIBROSIS TRANSMEMBRANE CONDUCTANCE REGULATOR;

ADULT; ANXIETY; ARTICLE; CONSULTATION; CONTROLLED STUDY; CYSTIC FIBROSIS; DIAGNOSTIC TEST APPROVAL; DISEASE ASSOCIATION; FAMILY ASSESSMENT; FEMALE; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; NEWBORN SCREENING; PARENTAL ATTITUDE; PROSPECTIVE STUDY; QUESTIONNAIRE; SCREENING TEST; SWEAT TEST; TELEPHONE INTERVIEW; TERM BIRTH; CONSUMER ATTITUDE; CONSUMER HEALTH INFORMATION; GENETIC SCREENING; GENETICS; NEEDS ASSESSMENT; NEWBORN; ORGANIZATION AND MANAGEMENT; PARENT; PERINATAL CARE; PREGNANCY; PROCEDURES; PSYCHOLOGY; STANDARDS; SWITZERLAND;

ADULT; CONSUMER BEHAVIOR; CONSUMER HEALTH INFORMATION; CYSTIC FIBROSIS; CYSTIC FIBROSIS TRANSMEMBRANE CONDUCTANCE REGULATOR; FEMALE; GENETIC TESTING; HUMANS; INFANT, NEWBORN; MALE; NEEDS ASSESSMENT; NEONATAL SCREENING; PARENTS; PERINATAL CARE; PREGNANCY; SURVEYS AND QUESTIONNAIRES; SWITZERLAND;

EID: 84951988386     PISSN: 15691993     EISSN: 18735010     Source Type: Journal    
DOI: 10.1016/j.jcf.2015.12.003     Document Type: Article

References (31)

1. [1] Balfour-Lynn, I.M., Newborn screening for cystic fibrosis: evidence for benefit. Arch Dis Child 93 (2008), 7–10.
2. [2] Brice, P., Jarrett, J., Mugford, M., Genetic screening for cystic fibrosis: an overview of the science and the economics. J Cyst Fibros 6 (2007), 255–261.
3. [3] Castellani, C., Evidence for newborn screening for cystic fibrosis. Paediatr Respir Rev 4 (2003), 278–284.
4. [4] Helton, J.L., Harmon, R.J., Robinson, N., Accurso, F.J., Parental attitudes toward newborn screening for cystic fibrosis. Pediatr Pulmonol Suppl 7 (1991), 23–28.
5. [5] Boland, C., Thompson, N.L., Effects of newborn screening of cystic fibrosis on reported maternal behaviour. Arch Dis Child 65 (1990), 1240–1244.
6. [6] Tluczek, A., Koscik, R.L., Farrell, P.M., Rock, M.J., Psychosocial risk associated with newborn screening for cystic fibrosis: parents' experience while awaiting the sweat-test appointment. Pediatrics 115 (2005), 1692–1703.
7. [7] Grob, R., Is my sick child healthy? Is my healthy child sick?: changing parental experiences of cystic fibrosis in the age of expanded newborn screening. Soc Sci Med 67 (2008), 1056–1064.
8. [8] Tluczek, A., McKechnie, A.C., Brown, R.L., Factors associated with parental perception of child vulnerability 12 months after abnormal newborn screening results. Res Nurs Health 34 (2011), 389–400.
9. [9] Tluczek, A., Mischler, E.H., Bowers, B., et al. Psychological impact of false-positive results when screening for cystic fibrosis. Pediatr Pulmonol Suppl 7 (1991), 29–37.
10. [10] Tluczek, A., Mischler, E.H., Farrell, P.M., et al. Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing. J Dev Behav Pediatr 13 (1992), 181–186.
11. [11] Tluczek, A., Orland, K.M., Cavanagh, L., Psychosocial consequences of false-positive newborn screens for cystic fibrosis. Qual Health Res 21 (2011), 174–186.
12. [12] Castellani, C., Southern, K.W., Brownlee, K., et al. European best practice guidelines for cystic fibrosis neonatal screening. J Cyst Fibros 8 (2009), 153–173.
13. [13] O'Higgins, M., Roberts, I.S., Glover, V., Taylor, A., Mother–child bonding at 1 year; associations with symptoms of postnatal depression and bonding in the first few weeks. Arch Womens Ment Health 16 (2013), 381–389.
14. [14] Beucher, J., Leray, E., Deneuville, E., et al. Psychological effects of false-positive results in cystic fibrosis newborn screening: a two-year follow-up. J Pediatr 156 (2010), 771–776 [6 e1].
15. [15] Tluczek, A., Koscik, R.L., Modaff, P., et al. Newborn screening for cystic fibrosis: parents' preferences regarding counseling at the time of infants' sweat test. J Genet Couns 15 (2006), 277–291.
16. [16] Dillard, J.P., Shen, L., Robinson, J.D., Farrell, P.M., Parental information seeking following a positive newborn screening for cystic fibrosis. J Health Commun 15 (2010), 880–894.
17. [17] Ulph, F., Cullinan, T., Qureshi, N., Kai, J., Informing children of their newborn screening carrier result for sickle cell or cystic fibrosis: qualitative study of parents' intentions, views and support needs. J Genet Couns 23 (2014), 409–420.
18. [18] Suriadi, C., Jovanovska, M., Quinlivan, J.A., Factors affecting mothers' knowledge of genetic screening. Aust N Z J Obstet Gynaecol 44 (2004), 30–34.
19. [19] Sawyer, S.M., Glazner, J.A., What follows newborn screening? An evaluation of a residential education program for parents of infants with newly diagnosed cystic fibrosis. Pediatrics 114 (2004), 411–416.
20. [20] Schweizerische Akademie der Medizinischen Wissenschaften, Vorgehen und Elterninformation bei der Einführung von neuen Screeningverfahren bei Neugeborenen. Schweiz Arzteztg 92 (2011), 267–268.
21. [21] Moran, J., Quirk, K., Duff, A.J., Brownlee, K.G., Newborn screening for CF in a regional paediatric centre: the psychosocial effects of false-positive IRT results on parents. J Cyst Fibros 6 (2007), 250–254.
22. [22] Ciske, D.J., Haavisto, A., Laxova, A., Rock, L.Z., Farrell, P.M., Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics 107 (2001), 699–705.
23. [23] de Monestrol, I., Brucefors, A.B., Sjöberg, B., Hjelte, L., Parental support for newborn screening for cystic fibrosis. Acta Paediatr 100 (2011), 209–215.
24. [24] Quinlivan, J.A., Suriadi, C., Attitudes of new mothers towards genetics and newborn screening. J Psychosom Obstet Gynaecol 27 (2006), 67–72.
25. [25] Green, J.M., Principles and practicalities of carrier screening: attitudes of recent parents. J Med Genet 29 (1992), 313–319.
26. [26] Watson, E.K., Marchant, J., Bush, A., Williamson, B., Attitudes towards prenatal diagnosis and carrier screening for cystic fibrosis among the parents of patients in a paediatric cystic fibrosis clinic. J Med Genet 29 (1992), 490–491.
27. [27] Barben, J., Gallati, S., Fingerhut, R., Schoeni, M.H., Baumgartner, M.R., Torresani, T., Retrospective analysis of stored dried blood spots from children with cystic fibrosis and matched controls to assess the performance of a proposed newborn screening protocol in Switzerland. J Cyst Fibros 11 (2012), 332–336.
28. [28] Torresani, T., Fingerhut, R., Rueegg, C.S., et al. Newborn screening for cystic fibrosis in Switzerland — consequences after analysis of a 4 months pilot study. J Cyst Fibros 12 (2013), 667–674.
29. [29] Rueegg, C.S., Kuehni, C.E., Gallati, S., Baumgartner, M., Torresani, T., Barben, J., One-year evaluation of a neonatal screening program for cystic fibrosis in Switzerland. Dtsch Arztebl Int 110 (2013), 356–363.
30. [30] Spoerri, A., Zwahlen, M., Egger, M., Bopp, M., The Swiss National Cohort: a unique database for national and international researchers. Int J Public Health 55 (2010), 239–242.
31. [31] Vernooij-van Langen, A.M., Loeber, J.G., Elvers, B., et al. Novel strategies in newborn screening for cystic fibrosis: a prospective controlled study. Thorax 67 (2012), 289–295.