BACKGROUND: Genetic carrier screening is increasingly possible for many conditions, but it is important to ensure decisions are informed. The multidimensional measure of informed choice (MMIC) is a quantitative instrument developed to evaluate informed choice in prenatal screening for Down syndrome, measuring knowledge, attitudes and uptake. To apply the MMIC in other screening settings, the knowledge scale must be modified. OBJECTIVE: To develop and validate a modified MMIC knowledge scale for use with women undergoing carrier screening for fragile X syndrome (FXS). SETTING AND PARTICIPANTS: Responses to MMIC items were collected through questionnaires as part of a FXS carrier screening pilot study in a preconception setting in Melbourne, Australia. DESIGN: Ten knowledge scale items were developed using a modified Delphi technique. Cronbach's alpha and factor analysis were used to validate the new FXS knowledge scale. We summarized the knowledge, attitudes and informed choice status based on the modified MMIC. RESULTS: Two hundred and eighty-five women were recruited, 241 eligible questionnaires were complete for analysis. The FXS knowledge scale items measured one salient construct and were internally consistent (alpha = 0.70). 71% (172/241) of participants were classified as having good knowledge, 70% (169/241) had positive attitudes and 27% (65/241) made an informed choice to accept or decline screening. DISCUSSION AND CONCLUSIONS: We present the development of a knowledge scale as part of a MMIC to evaluate informed choice in population carrier screening for FXS. This can be used as a template by other researchers to develop knowledge scales for other conditions for use in the MMIC.
BACKGROUND: Genetic carrier screening is increasingly possible for many conditions, but it is important to ensure decisions are informed. The multidimensional measure of informed choice (MMIC) is a quantitative instrument developed to evaluate informed choice in prenatal screening for Down syndrome, measuring knowledge, attitudes and uptake. To apply the MMIC in other screening settings, the knowledge scale must be modified. OBJECTIVE: To develop and validate a modified MMIC knowledge scale for use with women undergoing carrier screening for fragile X syndrome (FXS). SETTING AND PARTICIPANTS: Responses to MMIC items were collected through questionnaires as part of a FXS carrier screening pilot study in a preconception setting in Melbourne, Australia. DESIGN: Ten knowledge scale items were developed using a modified Delphi technique. Cronbach's alpha and factor analysis were used to validate the new FXS knowledge scale. We summarized the knowledge, attitudes and informed choice status based on the modified MMIC. RESULTS: Two hundred and eighty-five women were recruited, 241 eligible questionnaires were complete for analysis. The FXS knowledge scale items measured one salient construct and were internally consistent (alpha = 0.70). 71% (172/241) of participants were classified as having good knowledge, 70% (169/241) had positive attitudes and 27% (65/241) made an informed choice to accept or decline screening. DISCUSSION AND CONCLUSIONS: We present the development of a knowledge scale as part of a MMIC to evaluate informed choice in population carrier screening for FXS. This can be used as a template by other researchers to develop knowledge scales for other conditions for use in the MMIC.
Authors: Patricia Dolan Mullen; Jennifer Dacey Allen; Karen Glanz; Maria E Fernandez; Deborah J Bowen; Sandi L Pruitt; Beth A Glenn; Michael Pignone Journal: Ann Behav Med Date: 2006-12
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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
Authors: Sylvia A Metcalfe; Melissa Martyn; Alice Ames; Vicki Anderson; Alison D Archibald; Grad Dip Gen Couns; Rob Carter; Jonathan Cohen; Megan Cotter; M GenCouns; William Dang; Martin B Delatycki; Susan Donath; Samantha Edwards; PGrad Dip Educ; Grad Dip Gen Couns; Robin Forbes; Grad Dip Gen Couns; Mioara Gavrila; M MedSci; Jane Halliday; Chriselle Hickerton; Melissa Hill; Grad Dip Gen Couns; Lorilli Jacobs; PGrad Dip Ultrasound; Vicki Petrou; Grad Dip Gen Couns; Loren Plunkett; M GenCouns; Leslie Sheffield; F Racp; Alison Thornton; Grad Dip Gen Couns; Sandra Younie; PGrad Dip Hlth Econ; Jon D Emery Journal: Genet Med Date: 2017-06-29 Impact factor: 8.822
Authors: M Martyn; V Anderson; A Archibald; R Carter; J Cohen; M Delatycki; S Donath; J Emery; J Halliday; M Hill; L Sheffield; H Slater; F Tassone; S Younie; S Metcalfe Journal: BMJ Open Date: 2013-09-10 Impact factor: 2.692