Attitudes of Potential Providers Towards Preconceptional Cystic Fibrosis Carrier Screening

Overview

Journal J Genet Couns

Publisher Wiley

Specialty Genetics

Date 2009 Sep 10

PMID 19739281

Citations 13

Authors

Francis A M Poppelaars

Herman J Ader

Martina C Cornel

Lidewij Henneman

Rosella P M G Hermens

Gerrit van der Wal

Leo P Ten Kate

Affiliations

Soon will be listed here.

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.

Citing Articles

Scaling-up and future sustainability of a national reproductive genetic carrier screening program.

Fehlberg Z, Best S, Long J, Theodorou T, Pope C, Hibbert P NPJ Genom Med. 2023; 8(1):18.

PMID: 37524740 PMC: 10390466. DOI: 10.1038/s41525-023-00357-w.

Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.

Hussein N, Henneman L, Kai J, Qureshi N Cochrane Database Syst Rev. 2021; 10:CD010849.

PMID: 34634131 PMC: 8504980. DOI: 10.1002/14651858.CD010849.pub4.

Health practitioners' perceptions of the barriers and enablers to the implementation of reproductive genetic carrier screening: A systematic review.

Best S, Long J, Theodorou T, Hatem S, Lake R, Archibald A Prenat Diagn. 2021; 41(6):708-719.

PMID: 33533079 PMC: 8252081. DOI: 10.1002/pd.5914.

Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.

Hussein N, Weng S, Kai J, Kleijnen J, Qureshi N Cochrane Database Syst Rev. 2018; 3:CD010849.

PMID: 29537064 PMC: 6494256. DOI: 10.1002/14651858.CD010849.pub3.

Preconception risk assessment for thalassaemia, sickle cell disease, cystic fibrosis and Tay-Sachs disease.

Hussein N, Weng S, Kai J, Kleijnen J, Qureshi N Cochrane Database Syst Rev. 2015; (8):CD010849.

PMID: 26264938 PMC: 6486309. DOI: 10.1002/14651858.CD010849.pub2.

References

Tambor E, Bernhardt B, Chase G, Faden R, Geller G, Hofman K . Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization. Am J Hum Genet. 1994; 55(4):626-37. PMC: 1918300. View

Watson E, Williamson R, Chapple J . Attitudes to carrier screening for cystic fibrosis: a survey of health care professionals, relatives of sufferers and other members of the public. Br J Gen Pract. 1991; 41(347):237-40. PMC: 1371586. View

Key C, Layton D, Shakir S . Results of a postal survey of the reasons for non-response by doctors in a Prescription Event Monitoring study of drug safety. Pharmacoepidemiol Drug Saf. 2002; 11(2):143-8. DOI: 10.1002/pds.690. View

Scheffer H, van den Ouweland A, Veeze H . [From gene to disease; from defective chloride ion transport to cystic fibrosis]. Ned Tijdschr Geneeskd. 2001; 145(14):686-7. View

Grol R . Personal paper. Beliefs and evidence in changing clinical practice. BMJ. 1997; 315(7105):418-21. PMC: 2127297. DOI: 10.1136/bmj.315.7105.418. View

Bekker H, Denniss G, Modell M, Bobrow M, Marteau T . The impact of population based screening for carriers of cystic fibrosis. J Med Genet. 1994; 31(5):364-8. PMC: 1049866. DOI: 10.1136/jmg.31.5.364. View

Rommens J, Iannuzzi M, Kerem B, Drumm M, Melmer G, Dean M . Identification of the cystic fibrosis gene: chromosome walking and jumping. Science. 1989; 245(4922):1059-65. DOI: 10.1126/science.2772657. View

Grody W, Cutting G, Klinger K, Richards C, Watson M, Desnick R . Laboratory standards and guidelines for population-based cystic fibrosis carrier screening. Genet Med. 2001; 3(2):149-54. DOI: 10.1097/00125817-200103000-00010. View

. Genetic testing for cystic fibrosis. National Institutes of Health Consensus Development Conference Statement on genetic testing for cystic fibrosis. Arch Intern Med. 1999; 159(14):1529-39. View

10.

Rowley P, Loader S, Levenkron J, Phelps C . Cystic fibrosis carrier screening: knowledge and attitudes of prenatal care providers. Am J Prev Med. 1993; 9(5):261-6. View

11.

Loeben G, Marteau T, Wilfond B . Mixed messages: presentation of information in cystic fibrosis-screening pamphlets. Am J Hum Genet. 1998; 63(4):1181-9. PMC: 1377469. DOI: 10.1086/302036. View

12.

Stronks K, Ravelli A, Reijneveld S . Immigrants in the Netherlands: equal access for equal needs?. J Epidemiol Community Health. 2001; 55(10):701-7. PMC: 1731789. DOI: 10.1136/jech.55.10.701. View

13.

Mennie M, Campbell H, Liston W, Brock D . Attitudes of general practitioners to screening for cystic fibrosis. J Med Screen. 1998; 5(1):11-5. DOI: 10.1136/jms.5.1.11. View

14.

Bernhardt B, Chase G, Faden R, Geller G, Hofman K, Tambor E . Educating patients about cystic fibrosis carrier screening in a primary care setting. Arch Fam Med. 1996; 5(6):336-40. DOI: 10.1001/archfami.5.6.336. View

15.

Henneman L, Poppelaars F, Ten Kate L . Evaluation of cystic fibrosis carrier screening programs according to genetic screening criteria. Genet Med. 2002; 4(4):241-9. DOI: 10.1097/00125817-200207000-00002. View

16.

Kaner E, Haighton C, McAvoy B . 'So much post, so busy with practice--so, no time!': a telephone survey of general practitioners' reasons for not participating in postal questionnaire surveys. Br J Gen Pract. 1998; 48(428):1067-9. PMC: 1410021. View

17.

McCormick J, Green M, Mehta G, Culross F, Mehta A . Demographics of the UK cystic fibrosis population: implications for neonatal screening. Eur J Hum Genet. 2002; 10(10):583-90. DOI: 10.1038/sj.ejhg.5200850. View

18.

Bobadilla J, Macek Jr M, Fine J, Farrell P . Cystic fibrosis: a worldwide analysis of CFTR mutations--correlation with incidence data and application to screening. Hum Mutat. 2002; 19(6):575-606. DOI: 10.1002/humu.10041. View

19.

Poppelaars F, van der Wal G, Braspenning J, Cornel M, Henneman L, Langendam M . Possibilities and barriers in the implementation of a preconceptional screening programme for cystic fibrosis carriers: a focus group study. Public Health. 2003; 117(6):396-403. DOI: 10.1016/S0033-3506(03)00136-7. View

20.

de Walle H, de Jong-van den Berg L, Cornel M . Periconceptional folic acid intake in the northern Netherlands. Lancet. 1999; 353(9159):1187. DOI: 10.1016/s0140-6736(05)74409-3. View