Literature DB >> 8329922

Uptake of cystic fibrosis testing in primary care: supply push or demand pull?

H Bekker1, M Modell, G Denniss, A Silver, C Mathew, M Bobrow, T Marteau.   

Abstract

OBJECTIVE: To determine the acceptability and feasibility of screening for carriers of cystic fibrosis in a primary care setting.
DESIGN: Follow up study over 15 months of patients offered carrier testing by mouthwash.
SETTING: A general practice in inner London.
SUBJECTS: 5529 patients aged 18-45 invited by various methods and combinations of methods (letter, booklet, personal approach) for testing. MAIN OUTCOME MEASURES: Uptake of screening, anxiety, and knowledge of test.
RESULTS: 957 (17%) invitees were screened over the 15 months. 28 carriers and no carrier couples were detected. Uptake rates were 12% (59/502 patients) among patients invited by letter and tested by appointment; 9% (47/496) among patients invited by letter, with leaflet, and tested by appointment; 4% (128/2953) among patients invited by letter six weeks before the end of the study and tested by appointment; 17% (81/471) among patients offered passive opportunistic testing; 70% (453/649) among patients offered active opportunistic testing; and 25% (22/88) among patients offered active opportunistic testing by appointment. A short term rise in anxiety among those given a positive test result had dissipated by three months. At three months about one fifth and one third of those given positive and negative results respectively did not understand their results correctly.
CONCLUSION: These results suggest that the strongest variable in determining uptake of screening is the active approach by a health professional offering immediate testing. It remains to be resolved whether the high uptake rates achieved by active recruitment indicate a supply push for this new test rather than a demand from the population.

Entities:  

Keywords:  Empirical Approach; Genetics and Reproduction; Health Care and Public Health; National Health Service

Mesh:

Substances:

Year:  1993        PMID: 8329922      PMCID: PMC1678014          DOI: 10.1136/bmj.306.6892.1584

Source DB:  PubMed          Journal:  BMJ        ISSN: 0959-8138


  20 in total

1.  Population screening for cystic fibrosis.

Authors:  F A Flinter; A Silver; C G Mathew; M Bobrow
Journal:  Lancet       Date:  1992-06-20       Impact factor: 79.321

2.  The incidence of different cystic fibrosis mutations in the Scottish population: effects on prenatal diagnosis and genetic counselling.

Authors:  A E Shrimpton; I McIntosh; D J Brock
Journal:  J Med Genet       Date:  1991-05       Impact factor: 6.318

3.  Methods for analysis of multiple cystic fibrosis mutations.

Authors:  I S Ng; R Pace; M V Richard; K Kobayashi; B Kerem; L C Tsui; A L Beaudet
Journal:  Hum Genet       Date:  1991-09       Impact factor: 4.132

4.  Cutaneous reactions in relation to the use of 'TED'-stockings.

Authors:  A Bak-Christensen; B Dimo; D Samson; P Wille-Jørgensen
Journal:  Lancet       Date:  1989-12-02       Impact factor: 79.321

5.  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

6.  Community attitudes to cystic fibrosis carrier screening.

Authors:  L P Ten Kate; T Tijmstra
Journal:  Prenat Diagn       Date:  1990-04       Impact factor: 3.050

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.  The cystic fibrosis gene: medical and social implications for heterozygote detection.

Authors:  B S Wilfond; N Fost
Journal:  JAMA       Date:  1990 May 23-30       Impact factor: 56.272

9.  Association of a nonsense mutation (W1282X), the most common mutation in the Ashkenazi Jewish cystic fibrosis patients in Israel, with presentation of severe disease.

Authors:  T Shoshani; A Augarten; E Gazit; N Bashan; Y Yahav; Y Rivlin; A Tal; H Seret; L Yaar; E Kerem
Journal:  Am J Hum Genet       Date:  1992-01       Impact factor: 11.025

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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  49 in total

Review 1.  The challenge of integrating genetic medicine into primary care.

Authors:  J Emery; S Hayflick
Journal:  BMJ       Date:  2001-04-28

2.  Evaluation of questionnaire on cancer family history in general practice. Principal role of primary care is not to seek out those at increased genetic risk.

Authors:  J Emery
Journal:  BMJ       Date:  2000-01-15

Review 3.  Increasing informed uptake and non-uptake of screening: evidence from a systematic review.

Authors:  R G Jepson; C A Forbes; A J Sowden; R A Lewis
Journal:  Health Expect       Date:  2001-06       Impact factor: 3.377

4.  The ethics and impact on behaviour of knowledge about one's own genome. Interview by Judy Jones.

Authors:  M Levitt
Journal:  BMJ       Date:  1999-11-13

5.  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

6.  A measure of informed choice.

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

7.  Carrier screening in preconception consultation in primary care.

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

8.  Perceived relevance of genetic carrier screening: observations of the role of health-related life experiences and stage of life in decision making.

Authors:  Alison D Archibald; Belinda J McClaren
Journal:  J Community Genet       Date:  2011-11-17

9.  Genetic counseling: the impact in Indian milieu.

Authors:  Shubha R Phadke; Amita Pandey; Ratna Dua Puri; S J Patil
Journal:  Indian J Pediatr       Date:  2004-12       Impact factor: 1.967

10.  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

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