Psychosocial Impact of Predictive Testing for Myotonic Dystrophy Type 1

Psychosocial Impact of Predictive Testing for Myotonic Dystrophy Type 1

Psychosocial Impact of Predictive Testing for Myotonic Dystrophy Type 1

Psychosocial Impact of Predictive Testing for Myotonic Dystrophy Type 1s

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Référence bibliographique [4087]

American Journal of Medical Genetics Part A, vol. 126, no 1, p. 68-77.

Fiche synthèse

1. Objectifs


Intentions :
« The goals of the present study were (1) to provide a sociodemographic description of the test applicants, (2) to analyze their motives for requesting a predictive test, (3) to assess the psychosocial impact of predictive testing and, (4) to examine the opinions of participants toward the predictive program. » (p. 69)

2. Méthode


Échantillon/Matériau :
« From 1 to 12 years (median, 5 years) after receiving predictive testing, a total of 308 participants (44 carriers and 264 non-carriers) answered a questionnaire to determine the psychosocial impact of this genetic testing. » (p. 70)

Instruments :
- « The questionnaire (56 multiple-choice items) took an average of 40 min to be completed » (p. 70);
- Psychiatric Symptom Index (PSI);
- Rosenberg Self-Esteem Scale.

Type de traitement des données :
Analyse statistique

3. Résumé


« In the Saguenay–Lac-Saint-Jean region (Quebec, Canada), a predictive DNA-testing program for myotonic dystrophy type 1 (DM1) has been available as a clinical service since 1988. [...] The main reasons for wanting to be tested were to learn if children are at risk for DM1 or for reproductive decision making (75%) and to relieve the uncertainty for themselves (17%). The majority of participants (96.1%) remembered correctly their test result. At the time of the survey, the perception of the general well-being, the psychological distress (Psychiatric Symptom Index), and the self-esteem (Rosenberg Self-Esteem Scale) were similar in carriers, in non-carriers, and in the reference (Quebec) population. When participants indicated a change in different aspects of their lives following predictive testing, it was perceived as a change for the better by non-carriers and as a change for the worse by carriers. Nevertheless, for a majority of carriers and of non-carriers, the test result did not bring changes in their lives. All respondents believed that predictive testing should be available for the at-risk population and the vast majority of carrier and of non-carriers would recommend the use of predictive testing to their family members. Predictive testing for individuals at-risk of DM1 can be offered safely within a well-organized clinical and genetic counseling program that includes careful pre-test counseling, pre-test clinical assessment, post-test psychological support, and follow-up for those identified as carriers. » (p. 68)