Attitudes towards reproductive issues and carrier testing among adult patients and parents of children with cystic fibrosis (CF)

Henneman, Lidewij; Bramsen, I.; Os, Th. A. M. Van; Reuling, I. E. W.; Heyerman, H. G. M.; Laag, J. van der; Ploeg, Henk M. van der; Kate, Leo P. ten

doi:10.1002/1097-0223(200101)21:1<1::aid-pd967>3.0.co;2-#

Cited by 68 publications

(59 citation statements)

References 16 publications

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“…Parents of children with genetic diseases or multifactorial diseases with a genetic etiology [Brunger et al, 2000; Fitzgerald-Butt et al, 2010; Henneman et al, 2001; Kocken et al, 2013; Skinner et al, 2003; Umans-Eckenhausen et al, 2002], in general, have a positive attitude towards genetic testing and are interested in testing their children. Previous research has not shown whether parents understand genetics, genetic testing, and the implications of genetic testing for their child and family.…”

Section: Discussionmentioning

confidence: 99%

Genetic knowledge and attitudes of parents of children with congenital heart defects

Fitzgerald-Butt

Klima

Kelleher

et al. 2014

American J of Med Genetics Pt A

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Clinical genetic testing for specific isolated congenital heart defects (CHD) is becoming standard of care in pediatric cardiology practice. Both genetic knowledge and attitudes toward genetic testing are associated with an increased utilization of genetic testing, but these factors have not been evaluated in parents of children with CHD. We mailed a survey to measure the demographics, genetic knowledge, and attitudes towards genetic testing of parents of children with CHD who previously consented to participate in a separate research study of the genetic etiology of left ventricular outflow tract malformations (LVOT). Of the 378 eligible families, 190 (50%) returned surveys with both parents completing surveys in 97 (51%) families, resulting in 287 participants. Genetic knowledge was assessed on an adapted measure on which the mean percent correct was 73.8%. Educational attainment and household income were directly and significantly associated with genetic knowledge (p<0.001). Attitudes about the health effects of genetic testing were favorable with at least 57% agreeing that genetic testing would be used for managing health care and finding cures for disease. Conversely, a minority of participants found it likely that genetic testing would be used for insurance (up to 39.9%), employment (15.8%), or racial/social discrimination (up to 11.2%). Parents of younger children were less likely to endorse employment or racial/social discrimination. Genetic knowledge was not correlated with specific attitudes. Among parents of children with CHD, genetic knowledge was directly associated with household income and education, but additional research is necessary to determine what factors influence attitudes towards genetic testing.

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Section: Discussionmentioning

confidence: 99%

Genetic knowledge and attitudes of parents of children with congenital heart defects

Fitzgerald-Butt

Klima

Kelleher

et al. 2014

American J of Med Genetics Pt A

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“…First, although the included five diagnostic groups represent the majority of chronic digestive diseases, not every chronic digestive disease is represented. For example, chronic digestive disorders in cystic fibrosis were excluded because a study [18] on the medical, psychological and social consequences of cystic fibrosis was carried out in the Netherlands in the same period. Second, the fact that many patients were recruited by clinicians in academic centres may have led to selection bias.…”

Section: Discussionmentioning

confidence: 99%

Social position of adolescents with chronic digestive disorders

Calsbeek

Rijken

Bekkers

et al. 2002

European Journal of Gastroenterology & Hepatology

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“…Attitudes about population CF carrier screening Overall, individuals with CF, their parents and other relatives are supportive of population CF carrier screening being made available (Watson et al 1991a;Myers et al 1994;Henneman et al 2001a;Poppelaars et al 2003a;McClaren et al 2008;Maxwell et al 2011) as are many members of the general public in studies in which screening was not offered: in the UK (Watson et al 1991a), Belgium (Decruyenaere et al 1992;Welkenhuysen et al 1996), USA (Botkin and Alemagno 1992;Myers et al 1994), Canada (Melancon and De Braekeleer 1996), the Netherlands (Poppelaars et al 2003a(Poppelaars et al , 2003bPoppelaars et al 2004a) and Australia (McClaren et al 2008). Nevertheless, barriers to implementing screening were often acknowledged, in particular, around the lack of prior awareness of CF and perceptions of relevance for those without a family history.…”

Section: Carrier Screening For Cystic Fibrosismentioning

confidence: 99%

Carrier screening in preconception consultation in primary care

Metcalfe

2011

J Community Genet

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Discussing carrier screening during preconception consultation in primary care has a number of advantages in terms of promoting autonomy and enabling the greatest range of reproductive choices. For those with a family history of an inherited condition, this ought to be a routine discussion; however, this can be expanded to include the wider population, especially for those conditions for which carrier frequencies are considered relatively common. There is published literature from around the world regarding experiences with carrier screening in primary care for cystic fibrosis, haemoglobinopathies, fragile X syndrome, Tay-Sachs disease and spinal muscular atrophy, although many of these have tended to focus on consultations during rather than before pregnancy. Overall, these studies reveal that population carrier screening is well received by the participants with apparent minimal psychosocial harms; however, challenges exist in terms of approaches to ensure couples receive adequate information to make personally relevant decisions and for ongoing health professional engagement.

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Attitudes towards reproductive issues and carrier testing among adult patients and parents of children with cystic fibrosis (CF)

Cited by 68 publications

References 16 publications

Genetic knowledge and attitudes of parents of children with congenital heart defects

Genetic knowledge and attitudes of parents of children with congenital heart defects

Social position of adolescents with chronic digestive disorders

Carrier screening in preconception consultation in primary care

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