title: Considering consent: a structural equation modelling analysis of factors influencing decisional quality when accepting newborn screening.
abstract: BACKGROUND
  Newborn bloodspot screening (NBS) programs generate an ethical tension between promoting the uptake of effective public health measures and facilitating informed consent from individuals.
  
  
  OBJECTIVE
  To explore the factors that affect parental perceptions of decision quality when accepting NBS METHODS: Survey of parents with children screened in 2008 (n = 154, 32% response rate). Questions were based on previous research and existing measures. The primary outcome was decision quality. Predictors were latent constructs of Attitudes to medicine, Perceived knowledge, Attitudes to screening, and Perceived choice. Responses were analysed using structural equation modelling.
  
  
  RESULTS
  Increases in perceived choice and positive attitudes towards screening improved decision quality. Perceived knowledge had a significant and positive relationship with attitudes to screening (0.375, p < 0.01) as did perceived choice on perceived knowledge (0.806, p < 0.01). Attitudes to screening were also significantly influenced by attitudes to medicine, although less so than the effect of perceived knowledge. The model had good fit on all indices (χ(2) = 61.396, df = 48, p = 0.093; CFI = 0.979; RMSEA = 0.043).
  
  
  CONCLUSIONS
  Our results implicate the presentation of screening as a key determinant of decision quality both in terms of the immediate information regarding the potential benefits and risks, but also the way in which consent processes are managed. If we want to better understand parent decision-making we need to go beyond analyses of information content, or parental recall of this, but consider the context in which screening is provided.
authors.affiliation: Department of Epidemiology and Community Medicine, University of Ottawa, K1H 8M5, Ottawa, Canada, snicholl@uottawa.ca.
authors.forename: Stuart G
authors.initials: SG
authors.lastname: Nicholls
authors.forename: Kevin W
authors.initials: KW
authors.lastname: Southern
mesh_terms: D000328:Adult; D002675:Child, Preschool; D002755:Choice Behavior; D003657:Decision Making; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent / Q000523:psychology*; D015997:Neonatal Screening / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D055815:Young Adult
references.citation: Med Decis Making. 1995 Jan-Mar;15(1):25-30
references.pmid: 7898294
references.citation: Health Expect. 2005 Jun;8(2):161-71
references.pmid: 15860056
references.citation: BMC Health Serv Res. 2005 Oct 03;5:64
references.pmid: 16202125
references.citation: Am J Public Health. 1982 Dec;72(12):1401-3
references.pmid: 7137439
references.citation: J Med Ethics. 2012 May;38(5):299-303
references.pmid: 22186830
references.citation: Prev Med. 2000 Feb;30(2):155-66
references.pmid: 10656843
references.citation: Pediatrics. 2006 May;117(5 Pt 2):S212-52
references.pmid: 16735250
references.citation: Community Genet. 2005;8(2):94-102
references.pmid: 15925885
references.citation: Am J Med Genet A. 2003 Jul 15;120A(2):209-14
references.pmid: 12833401
references.citation: Health Technol Assess. 1999;3(1):1-156
references.pmid: 10350446
references.citation: J Inherit Metab Dis. 2007 Aug;30(4):439-44
references.pmid: 17643197
references.citation: J Public Health (Oxf). 2006 Dec;28(4):309-17
references.pmid: 17060352
references.citation: Health Technol Assess. 2004 Aug;8(33):iii, ix-x, 1-109
references.pmid: 15298822
references.citation: Prev Med. 2002 Jun;34(6):567-77
references.pmid: 12052015
references.citation: Camb Q Healthc Ethics. 2006 Spring;15(2):135-46
references.pmid: 16610751
references.citation: J Inherit Metab Dis. 2012 Jul;35(4):613-25
references.pmid: 22544437
references.citation: Pediatrics. 1983 Dec;72(6):807-12
references.pmid: 6685863
references.citation: Health Serv Res. 2002 Oct;37(5):1419-39
references.pmid: 12479504
references.citation: J Inherit Metab Dis. 2007 Aug;30(4):447-65
references.pmid: 17643194
references.citation: Genet Med. 2012 Dec;14(12):963-70
references.pmid: 22899093
references.citation: J Inherit Metab Dis. 2007 Aug;30(4):490-506
references.pmid: 17643195
references.citation: Health Technol Assess. 2009 Nov;13(57):1-82, iii
references.pmid: 19948087
references.citation: J Inherit Metab Dis. 2007 Aug;30(4):482-9
references.pmid: 17701444
references.citation: Pediatrics. 2006 May;117(5 Pt 2):S326-40
references.pmid: 16735260
references.citation: Pediatrics. 1998 Jul;102(1 Pt 1):44-52
references.pmid: 9651412
references.citation: Pediatrics. 2006 May;117(5):1477-85
references.pmid: 16651300
references.citation: MMWR Morb Mortal Wkly Rep. 2011 May 20;60(19):619-23
references.pmid: 21597455
references.citation: Birth. 2007 Sep;34(3):238-44
references.pmid: 17718874
references.citation: Pediatrics. 2013 Jan;131(1):120-7
references.pmid: 23209103
references.citation: Ethn Health. 2011 Aug-Oct;16(4-5):361-75
references.pmid: 21797723
references.citation: Am J Public Health. 1982 Dec;72(12):1347-52
references.pmid: 7137431
references.citation: Clin Genet. 1990 Dec;38(6):460-5
references.pmid: 2289319
references.citation: Res Nurs Health. 1999 Aug;22(4):341-8
references.pmid: 10435551
references.citation: Pediatrics. 2001 Apr;107(4):699-705
references.pmid: 11335747
references.citation: Health Psychol. 2008 Jul;27(4):430-7
references.pmid: 18643000
references.citation: Pediatrics. 2005 Dec;116(6):1492-8
references.pmid: 16322176
references.citation: J Inherit Metab Dis. 2007 Aug;30(4):466-81
references.pmid: 17701285
references.citation: J Pediatr. 2005 Sep;147(3 Suppl):S106-8
references.pmid: 16202772
references.citation: Health Expect. 2001 Jun;4(2):116-26
references.pmid: 11359542