Attitudes of Potential Providers Towards Preconceptional Cystic Fibrosis Carrier Screening

Abstract

To determine the attitudes of potential providers (general practitioners and Community Health Service workers) towards preconceptional cystic fibrosis (CF) carrier screening and to determine which factors are associated with a positive attitude. A survey was conducted among 200 general practitioners (GPs) and 134 Community Health Service (CHS) workers. Fifty-two percent of the eligible GPs participated and 84% of the CHS workers. Fifty-five percent of the GPs and 73% of the CHS workers had a positive attitude towards routinely offering CF carrier screening, and more than 80% were in favor of informing the target population about the possibility of having a CF carrier test. A positive attitude was associated with (a) high perceived severity of CF (b) religion (nonreligious compared to Reformed), (c) low perceived barriers, and (d) high perceived test reliability. The care providers who are most likely to be involved in a preconceptional CF carrier screening program, i.e. GPs and CHS workers, generally have a positive attitude towards the implementation of such a program.

‘It is not in my world’: an exploration of attitudes and influences associated with cystic fibrosis carrier screening

“…This may be possible with community education initiatives that continue to focus on, prior to and in parallel with programme implementation, community consultation regarding the information provided with the offer of screening and, additionally initiatives that aim to increase public awareness and understanding of genetics and carrier screening. 6,26 It is well recognised that information resources have a role in aiding decision making regarding carrier screening. 10,29 In 1998, Loeben et al 29 evaluated 28 written resources, concluding that the way information is presented is also important.…”

Primary-care providers’ perceived barriers to integration of genetics services: a systematic review of the literature

“…The most frequently cited ELSI barrier (n = 18 citations in 16/38 studies) was the potential for patient anxiety and psychological distress around genetic risk. 7,11,32 PCPs mentioned the potential for a patient to react with anxiety to genetic test results 33 and that these results would put a burden on people who do not want to know about it, make carriers feel less healthy, 34 and potentially make patients feel "inadequate. " 35 PCPs also mentioned that genetic testing may have unanticipated findings that are secondary to the intent of ordering testing and that may cause distress among adults and minors regarding adult-onset disorders.…”

Carrier screening in preconception consultation in primary care

“…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. Indeed, health practitioners, while still supportive, often had more mixed views, and there were concerns around potential for psychosocial harms as well as the feasibility of offering screening, especially in the preconception setting (Watson et al 1991a;Boulton et al 1996;Faden et al 1994;Mennie et al 1998;Poppelaars et al 2003aPoppelaars et al , 2003bPoppelaars et al 2004b;Baars et al 2004;McClaren et al 2008).…”