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01-10-2006 | Original Research

The Perceived Advantages and Disadvantages of Presymptomatic Testing for Machado-Joseph Disease: Development of a New Self-Response Inventory

Authors: Luísa Rolim, José A. Zagalo-Cardoso, Constança Paúl, Jorge Sequeiros, Manuela Fleming

Published in: Journal of Genetic Counseling | Issue 5/2006

Abstract

This study describes the construction of a self-response inventory to evaluate the perception of advantages and disadvantages of the Machado-Joseph disease presymptomatic testing, in 44 individuals at-risk for this disease. The results showed that the reliability of this inventory was satisfactory. Factor analysis revealed a bidimensional structure: perceived advantages (pros) and perceived disadvantages (cons) of presymptomatic testing. Social desirability was found unrelated to the total scores of our inventory. Additional correlation studies, with other scales, confirmed the convergent validity of the instrument. These results suggest adequate construct validity. This inventory thus seems to be a proper instrument to assess expectations involved in the decision-making process of Machado-Joseph disease presymptomatic testing.

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The National Program of Presymptomatic Testing and Genetic Counseling in MJD was approved in 1995 and it began being implemented in January 1996. Along this first year, it was promoted the formation of national centers and the constitution of the respective teams as well as the elaboration of the consultation protocol. Still in the same year (1996) consultations had their beginning, as defined by the protocol, in four of the six centers. The balance of 1996 was positive, as this period corresponded to the implantation of the program and to the definition of its guiding principles, both in terms of investigation and clinical assistance.

This classifying system is simple, objective and more accessible (Nunnally, 1978) for the majority of individuals, who are thus not faced with the difficulty of having to choose between too close answering (e.g., I completely agree and agree; I completely disagree and disagree). On the other hand, in Likert scales, the answers do not always express the true attitude of individuals, since many of them are led to answer the items in systematically extreme or neutral ways (Simões, 1987).

Whereas some statisticians advise against the use of factor analysis with dichotomous variables (e.g., Gorsuch, 1983; Streiner, 1994), several other authors (Cattell, 1978; Kim and Mueller, 1978; Rummel, 1970) and extensive data show that it can be useful. Drawing a parallel with dummy variable regression, Cattell (1978) stated that a loading for 0–1 scaled variables can be interpreted in two ways: as the probability of its presence (if the loading is positive) or absence (if negative), given that the factor exists. Also, Kim and Mueller (1978) allow the use of factorial analysis with dichotomous data, if the underlying metric correlations between the variables are moderate (.70) or lower. This last condition was fulfilled (as we referred in the First Stage: Reliability Study), so it was possible to perform factor analysis.

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Title: The Perceived Advantages and Disadvantages of Presymptomatic Testing for Machado-Joseph Disease: Development of a New Self-Response Inventory
Authors: Luísa Rolim
José A. Zagalo-Cardoso
Constança Paúl
Jorge Sequeiros
Manuela Fleming
Publication date: 01-10-2006
Publisher: Kluwer Academic Publishers-Plenum Publishers
Published in: Journal of Genetic Counseling / Issue 5/2006
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-006-9033-8

2024 ASCO Annual Meeting

Springer Medicine

The Perceived Advantages and Disadvantages of Presymptomatic Testing for Machado-Joseph Disease: Development of a New Self-Response Inventory

Abstract

2024 ASCO Annual Meeting

Springer Medicine

Abstract

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