Preconceptional Cystic Fibrosis Carrier Screening: Attitudes and Intentions of the Target Population

Abstract

The aim of this study was to assess the attitudes and intentions of individuals planning a pregnancy with regard to preconceptional cystic fibrosis (CF) carrier screening and to determine factors associated with a positive and negative/neutral intention to have the test. A survey, based on a questionnaire, was conducted among a stratified random sample of 303 recently married couples (606 individuals). Of the eligible individuals, 70% (n = 380) participated. Of the respondents, 73% had a positive attitude toward a routine offer of preconceptional CF carrier screening, and 56% had the intention to participate in a screening program. A positive intention to have the test was associated with high perceived anticipation of regret, intended preconceptional behavior, high perceived pressure from experts, high perceived consequences of the test results, low perceived barriers, and low perceived negative consequences for family members. These results suggest that the offer of routine preconceptional CF carrier screening would lead to substantial acceptance among couples planning a pregnancy. Several variables related with intention were identified.

Population-based carrier screening for cystic fibrosis: a systematic review of 23 years of research

“…The majority of studies in which attitudes were measured showed that individuals of high school and college age had positive attitudes toward 27,28 However, most studies showed that the majority of those questioned did not want to have screening while at school. 19,24,27 Nonpregnant women and couples planning a pregnancy had positive attitudes, [30][31][32][33][34] with 69-89% believing that CF carrier screening should be routinely offered to all couples planning a pregnancy. 30,[32][33][34] Pregnant women had similar attitudes toward screening.…”

“…19,24,27 Nonpregnant women and couples planning a pregnancy had positive attitudes, [30][31][32][33][34] with 69-89% believing that CF carrier screening should be routinely offered to all couples planning a pregnancy. 30,[32][33][34] Pregnant women had similar attitudes toward screening. [35][36][37][38][39] Ninety-eight percent of pregnant women believed that the best time to offer screening is before pregnancy.…”

“…Other factors that influenced the decision to accept screening were ease of test procedure; individuals' feelings that they could not refuse the offer; individuals' feelings that they would regret not undergoing screening; perceived importance of the test; perceived positive consequences; perceived fewer barriers; and perceived less difficulty in informing relatives. 30,57,58 Other factors that influenced the decision to decline an offer of screening were concern about test sensitivity; not wishing to be tested during pregnancy; not wanting to know; insurability; limited knowledge; the requirement of a blood test; and religious beliefs. 15,31,59 Knowledge of cF and genetic screening Evaluating knowledge of CF and CF carrier screening can assess individuals'/couples' informed decision making in the context of accepting or declining such an offer.…”

Carrier screening in preconception consultation in primary care

“…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.…”

Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?

“…Factors affecting the decision to accept or decline carrier screening for CF have recently been reviewed by Chen et al 15 Important acceptance factors included 'higher perceived benefits' (eg, not having an affected child, knowing one's carrier status), 'weaker perceptions of barriers' (eg, social stigma, psychological harm), and 'having fewer or no children'. Acceptance factors reported elsewhere were lower perceived negative consequences of test results, 17 more knowledge, 16,17,19 strong perception of the severity of the disease, 15,20,21 high perceived susceptibility, 15,22,23 and higher socioeconomic status, female gender, and age. 15 Important factors for declining, reported by Chen et al, 15 included perceived barriers to obtain the screening, higher parity, lack of knowledge, and weaker perceptions of benefits.…”