Literature DB >> 7942840

Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization.

E S Tambor1, B A Bernhardt, G A Chase, R R Faden, G Geller, K J Hofman, N A Holtzman.   

Abstract

We offered cystic fibrosis (CF) carrier testing to reproductive-age enrollees in an HMO, in order to determine factors associated with test utilization in a primarily nonpregnant population. Male and female enrollees either were mailed an invitation to have the test after attending an educational session (N = 2,713) or were approached in waiting rooms at the HMO sites and given the opportunity to have the test without making an additional visit (N = 608). Uptake was considerably higher when testing could be obtained without making an additional visit (23.5%) than when attendance at an educational session was required as a prerequisite for having the test (3.7%). Utilization was higher among respondents who were planning children. Caucasians, and those with higher educational attainment. Among respondents planning to have children, individuals with higher tolerance for test uncertainty, lower fear of stigma, and higher perceived risk of being a carrier were significantly more likely to have the test. Testing decisions were not associated with the perceived burden of a child with CF or with the likelihood of aborting for CF. Although utilization of CF carrier testing is relatively low among nonpregnant individuals, uptake is significantly higher when testing can be obtained with minimal effort. Factors associated with the decision to be tested had more to do with implications of being a carrier per se than with the concerns of having a child with CF.

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Mesh:

Year:  1994        PMID: 7942840      PMCID: PMC1918300     

Source DB:  PubMed          Journal:  Am J Hum Genet        ISSN: 0002-9297            Impact factor:   11.025


  16 in total

1.  Carrier screening for cystic fibrosis: a pilot study of the attitudes of pregnant women.

Authors:  J R Botkin; S Alemagno
Journal:  Am J Public Health       Date:  1992-05       Impact factor: 9.308

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Journal:  Soc Sci Med       Date:  1977-05       Impact factor: 4.634

3.  Identification of the cystic fibrosis gene: genetic analysis.

Authors:  B Kerem; J M Rommens; J A Buchanan; D Markiewicz; T K Cox; A Chakravarti; M Buchwald; L C Tsui
Journal:  Science       Date:  1989-09-08       Impact factor: 47.728

4.  Sociologic studies in human genetics. I. Compliance factors in a voluntary heterozygote screening program.

Authors:  M M Kaback; M H Becker; M V Ruth
Journal:  Birth Defects Orig Artic Ser       Date:  1974

5.  Involving consumers in the development of an educational program for cystic fibrosis carrier screening.

Authors:  M F Myers; B A Bernhardt; E S Tambor; N A Holtzman
Journal:  Am J Hum Genet       Date:  1994-04       Impact factor: 11.025

6.  Identification of the cystic fibrosis gene: cloning and characterization of complementary DNA.

Authors:  J R Riordan; J M Rommens; B Kerem; N Alon; R Rozmahel; Z Grzelczak; J Zielenski; S Lok; N Plavsic; J L Chou
Journal:  Science       Date:  1989-09-08       Impact factor: 47.728

7.  Community attitudes to cystic fibrosis carrier testing in England: a pilot study.

Authors:  R Williamson; M E Allison; T J Bentley; S M Lim; E Watson; J Chapple; S Adam; M Boulton
Journal:  Prenat Diagn       Date:  1989-10       Impact factor: 3.050

8.  Parental perceptions of the burden of genetic disease.

Authors:  E E Ekwo; J O Kim; C A Gosselink
Journal:  Am J Med Genet       Date:  1987-12

9.  Identification of the cystic fibrosis gene: chromosome walking and jumping.

Authors:  J M Rommens; M C Iannuzzi; B Kerem; M L Drumm; G Melmer; M Dean; R Rozmahel; J L Cole; D Kennedy; N Hidaka
Journal:  Science       Date:  1989-09-08       Impact factor: 47.728

10.  Screening for carriers of cystic fibrosis through primary health care services.

Authors:  E K Watson; E Mayall; J Chapple; M Dalziel; K Harrington; C Williams; R Williamson
Journal:  BMJ       Date:  1991-08-31
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  35 in total

Review 1.  Who should know about our genetic makeup and why?

Authors:  T Takala; H A Gylling
Journal:  West J Med       Date:  2001-10

2.  Attitudes toward cystic fibrosis carrier and prenatal testing and utilization of carrier testing among relatives of individuals with cystic fibrosis.

Authors:  DeeDee Lafayette; Dianne Abuelo; Mary Ann Passero; Umadevi Tantravahi
Journal:  J Genet Couns       Date:  1999-02       Impact factor: 2.537

3.  A measure of informed choice.

Authors:  T M Marteau; E Dormandy; S Michie
Journal:  Health Expect       Date:  2001-06       Impact factor: 3.377

4.  Carrier screening in preconception consultation in primary care.

Authors:  Sylvia A Metcalfe
Journal:  J Community Genet       Date:  2011-12-20

5.  Parents' perspectives on participating in genetic research in autism.

Authors:  Magan Trottier; Wendy Roberts; Irene Drmic; Stephen W Scherer; Rosanna Weksberg; Cheryl Cytrynbaum; David Chitayat; Cheryl Shuman; Fiona A Miller
Journal:  J Autism Dev Disord       Date:  2013-03

6.  "It gives them more options": preferences for preconception genetic carrier screening for fragile X syndrome in primary healthcare.

Authors:  Alison D Archibald; Chriselle L Hickerton; Samantha A Wake; Alice M Jaques; Jonathan Cohen; Sylvia A Metcalfe
Journal:  J Community Genet       Date:  2016-02-03

Review 7.  Illness representations, self-regulation, and genetic counseling: a theoretical review.

Authors:  Shoshana Shiloh
Journal:  J Genet Couns       Date:  2006-10       Impact factor: 2.537

8.  Cystic fibrosis carrier population screening in the primary care setting.

Authors:  S Loader; P Caldwell; A Kozyra; J C Levenkron; C D Boehm; H H Kazazian; P T Rowley
Journal:  Am J Hum Genet       Date:  1996-07       Impact factor: 11.025

9.  Disclosure of genetic research results to members of a founder population.

Authors:  Rebecca L Anderson; Kathleen Murray; Jessica X Chong; Rebecca Ouwenga; Marina Antillon; Peixian Chen; Lorena Diaz de Leon; Kathryn J Swoboda; Lucille A Lester; Soma Das; Carole Ober; Darrel J Waggoner
Journal:  J Genet Couns       Date:  2014-04-29       Impact factor: 2.537

10.  Lack of interest by nonpregnant couples in population-based cystic fibrosis carrier screening.

Authors:  E W Clayton; V L Hannig; J P Pfotenhauer; R A Parker; P W Campbell; J A Phillips
Journal:  Am J Hum Genet       Date:  1996-03       Impact factor: 11.025

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