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Development of a fragile X syndrome ( FXS) knowledge scale: towards a modified multidimensional measure of informed choice for FXS population carrier screening.
- Source :
- Health Expectations; Feb2015, Vol. 18 Issue 1, p69-80, 12p, 5 Charts, 1 Graph
- Publication Year :
- 2015
-
Abstract
- 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. [ABSTRACT FROM AUTHOR]
- Subjects :
- DIAGNOSIS of fragile X syndrome
STATISTICAL correlation
DECISION making
DELPHI method
EXPERIMENTAL design
FACTOR analysis
GENETIC counseling
INTELLECT
RESEARCH methodology
PSYCHOMETRICS
QUESTIONNAIRES
RESEARCH evaluation
RESEARCH funding
SCALE analysis (Psychology)
GENETIC testing
PILOT projects
PRE-tests & post-tests
MULTITRAIT multimethod techniques
RESEARCH methodology evaluation
DATA analysis software
DESCRIPTIVE statistics
Subjects
Details
- Language :
- English
- ISSN :
- 13696513
- Volume :
- 18
- Issue :
- 1
- Database :
- Complementary Index
- Journal :
- Health Expectations
- Publication Type :
- Academic Journal
- Accession number :
- 100399356
- Full Text :
- https://doi.org/10.1111/hex.12009