{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,22]],"date-time":"2025-10-22T02:54:48Z","timestamp":1761101688780,"version":"3.37.3"},"reference-count":24,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2003,10,21]],"date-time":"2003-10-21T00:00:00Z","timestamp":1066694400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100009849","name":"Universit\u00e9 du Qu\u00e9bec \u00e0 Chicoutimi","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100009849","id-type":"DOI","asserted-by":"crossref"}]},{"name":"R\u00e9gie R\u00e9gionale de la Sant\u00e9 et des Services Sociaux (RRSSS) of the SLSJ region"},{"name":"Fonds de la Recherche en Sant\u00e9 du Qu\u00e9bec (FRSQ)"},{"DOI":"10.13039\/501100001804","name":"Canada Research Chairs Program","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100001804","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000024","name":"Canadian Institutes for Health Research","doi-asserted-by":"crossref","award":["CAR43283"],"award-info":[{"award-number":["CAR43283"]}],"id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2004,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>In the Saguenay\u2010Lac\u2010Saint\u2010Jean region (Quebec, Canada), a predictive DNA\u2010testing program for myotonic dystrophy type 1 (DM1) has been available as a clinical service since 1988. From 1 to 12 years (median, 5 years) after receiving predictive testing, a total of 308 participants (44 carriers and 264 non\u2010carriers) answered a questionnaire to determine the psychosocial impact of this genetic testing. 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\u2010being, the psychological distress (Psychiatric Symptom Index), and the self\u2010esteem (Rosenberg Self\u2010Esteem Scale) were similar in carriers, in non\u2010carriers, 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\u2010carriers and as a change for the worse by carriers. Nevertheless, for a majority of carriers and of non\u2010carriers, the test result did not bring changes in their lives. All respondents believed that predictive testing should be available for the at\u2010risk population and the vast majority of carrier and of non\u2010carriers would recommend the use of predictive testing to their family members. Predictive testing for individuals at\u2010risk of DM1 can be offered safely within a well\u2010organized clinical and genetic counseling program that includes careful pre\u2010test counseling, pre\u2010test clinical assessment, post\u2010test psychological support, and follow\u2010up for those identified as carriers. \u00a9 2003 Wiley\u2010Liss, Inc.<\/jats:p>","DOI":"10.1002\/ajmg.a.20560","type":"journal-article","created":{"date-parts":[[2004,3,17]],"date-time":"2004-03-17T00:01:50Z","timestamp":1079481710000},"page":"68-77","source":"Crossref","is-referenced-by-count":12,"title":["Psychosocial impact of predictive testing for myotonic dystrophy type 1"],"prefix":"10.1002","volume":"126A","author":[{"given":"Claude","family":"Pr\u00e9vost","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suzanne","family":"Veillette","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michel","family":"Perron","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claude","family":"Laberge","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carmen","family":"Tremblay","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julie","family":"Auclair","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jos\u00e9e","family":"Villeneuve","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marc","family":"Tremblay","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jean","family":"Mathieu","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2003,10,21]]},"reference":[{"key":"e_1_2_7_2_1","first-page":"606","article-title":"Proceed with care: Direct predictive testing for Huntington disease","volume":"55","author":"Benjamin CM","year":"1994","journal-title":"Am J Hum Genet"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320320215"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320540304"},{"volume-title":"Enqu\u00eate sociale et de sant\u00e9 1998","year":"2000","author":"Daveluy C","key":"e_1_2_7_5_1"},{"key":"e_1_2_7_6_1","first-page":"1","article-title":"Predictive testing for Huntington's disease: Risk perception, reasons for testing and psychological profile of test applicants","volume":"6","author":"Decruyenaere M","year":"1995","journal-title":"Genet Couns"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.38.12.852"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(00)00064-2"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.38.12.846"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320320214"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-8628(19961111)65:4<342::AID-AJMG18>3.0.CO;2-U"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/355545a0"},{"volume-title":"Myotonic dystrophy","year":"2001","author":"Harper PS","key":"e_1_2_7_13_1"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.2466\/pr0.1976.39.3f.1215"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.44.8.1533"},{"key":"e_1_2_7_16_1","doi-asserted-by":"crossref","first-page":"1218","DOI":"10.1212\/WNL.54.6.1218","article-title":"New nomenclature and DNA testing guidelines for myotonic dystrophy type 1 (DM1)","volume":"64","author":"International Myotonic Dystrophy Consortium (IDM1C)","year":"2000","journal-title":"Neurology"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.33.10.856"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.40.5.839"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320390408"},{"key":"e_1_2_7_20_1","unstructured":"Pr\u00e9villeM BoyerR PotvinL PerraultC L\u00e9gar\u00e9G.1992.La d\u00e9tresse psychologique: d\u00e9termination de la fiabilit\u00e9 et de la validit\u00e9 da la mesure utilis\u00e9e dans l'enqu\u00eate Sant\u00e9 Qu\u00e9bec Les cahiers de recherche no7. 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