OBJECTIVE: The goal was to assess women's knowledge and heart health behaviors consistent with the American Academy of Pediatrics recommendations for cardiac care among female carriers of Duchenne/Becker muscular dystrophy. METHODS: Using an advocacy group mailing list and working with 50 Muscular Dystrophy Association clinics, we surveyed women who had given birth to a son with Duchenne/Becker muscular dystrophy, thought that they were definitely or probably (>/=50% likelihood) a Duchenne/Becker muscular dystrophy carrier, or both. Self-report data classified respondents as carriers, noncarriers, or women with unknown status. RESULTS: The respondents included 833 Duchenne/Becker muscular dystrophy carriers, 376 noncarriers, and 192 women with unknown status. Carriers were more likely than noncarriers and women in the unknown-status group to have ever undergone electrocardiography or other heart testing and to have seen a cardiologist in the past year, but they were not more likely to report a recent blood pressure or cholesterol level check. Only 64.4% of the carriers had ever had a heart test; 18.3% had seen a cardiologist in the past year. Only 62.9% of the carriers were aware of their cardiomyopathy risks before participating in the survey; 69.3% had informed their health care provider of their carrier status. Among carriers who had informed their provider, 70.2% had ever had a heart test and 21.4% had seen a cardiologist in the past year. In adjusted logistic regression models, factors that significantly increased the likelihood among carriers of ever having had a heart test and seeing a cardiologist in the previous year included older age (>/=50 years), feeling informed about their cardiomyopathy risks before the survey, and having told their provider about their carrier status. CONCLUSION: More health education efforts are needed for both patients and their providers, to improve adherence to the American Academy of Pediatrics cardiac care guidelines for female Duchenne/Becker muscular dystrophy carriers.
OBJECTIVE: The goal was to assess women's knowledge and heart health behaviors consistent with the American Academy of Pediatrics recommendations for cardiac care among female carriers of Duchenne/Becker muscular dystrophy. METHODS: Using an advocacy group mailing list and working with 50 Muscular Dystrophy Association clinics, we surveyed women who had given birth to a son with Duchenne/Becker muscular dystrophy, thought that they were definitely or probably (>/=50% likelihood) a Duchenne/Becker muscular dystrophy carrier, or both. Self-report data classified respondents as carriers, noncarriers, or women with unknown status. RESULTS: The respondents included 833 Duchenne/Becker muscular dystrophy carriers, 376 noncarriers, and 192 women with unknown status. Carriers were more likely than noncarriers and women in the unknown-status group to have ever undergone electrocardiography or other heart testing and to have seen a cardiologist in the past year, but they were not more likely to report a recent blood pressure or cholesterol level check. Only 64.4% of the carriers had ever had a heart test; 18.3% had seen a cardiologist in the past year. Only 62.9% of the carriers were aware of their cardiomyopathy risks before participating in the survey; 69.3% had informed their health care provider of their carrier status. Among carriers who had informed their provider, 70.2% had ever had a heart test and 21.4% had seen a cardiologist in the past year. In adjusted logistic regression models, factors that significantly increased the likelihood among carriers of ever having had a heart test and seeing a cardiologist in the previous year included older age (>/=50 years), feeling informed about their cardiomyopathy risks before the survey, and having told their provider about their carrier status. CONCLUSION: More health education efforts are needed for both patients and their providers, to improve adherence to the American Academy of Pediatrics cardiac care guidelines for female Duchenne/Becker muscular dystrophy carriers.
Authors: Sean M Lang; Svetlana Shugh; Wojciech Mazur; Joshua J Sticka; Mantosh S Rattan; John L Jefferies; Michael D Taylor Journal: Pediatr Cardiol Date: 2015-05-16 Impact factor: 1.655
Authors: Dmitry Khodyakov; Kathi Kinnett; Sean Grant; Ann Lucas; Ann Martin; Brian Denger; Holly Peay; Ian Coulter; Arlene Fink Journal: JMIR Res Protoc Date: 2017-04-28