Bobo Janet Kay, Kenneson Aileen, Kolor Katherine, Brown Michael A
Battelle Centers for Public Health Research and Evaluation, 1100 Dexter Ave N, Suite 400, Seattle, WA 98109, USA.
Pediatrics. 2009 Mar;123(3):e471-5. doi: 10.1542/peds.2008-2643.
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.
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.
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.
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.
评估女性杜兴氏/贝克氏肌营养不良症携带者对美国儿科学会心脏护理建议的知晓情况及符合该建议的心脏健康行为。
利用一个倡导组织的邮件列表，并与50家肌肉萎缩症协会诊所合作，我们对那些生育过患有杜兴氏/贝克氏肌营养不良症儿子的女性、认为自己肯定或很可能（可能性≥50%）是杜兴氏/贝克氏肌营养不良症携带者的女性，或两者皆是进行了调查。自我报告数据将受访者分为携带者、非携带者或状态不明的女性。
受访者包括833名杜兴氏/贝克氏肌营养不良症携带者、376名非携带者和192名状态不明的女性。与非携带者和状态不明组的女性相比，携带者在过去一年接受心电图或其他心脏检查以及看心脏病专家的可能性更高，但她们报告近期进行血压或胆固醇水平检查的可能性并不更高。只有64.4%的携带者曾进行过心脏检查；18.3%的携带者在过去一年看过心脏病专家。只有62.9%的携带者在参与调查前知晓自己患心肌病的风险；69.3%的携带者已将自己的携带者状态告知了医疗服务提供者。在已告知医疗服务提供者的携带者中，70.2%曾进行过心脏检查，21.4%在过去一年看过心脏病专家。在调整后的逻辑回归模型中，显著增加携带者在过去一年进行心脏检查和看心脏病专家可能性的因素包括年龄较大（≥50岁）、在调查前了解自己患心肌病的风险以及已将自己的携带者状态告知医疗服务提供者。
患者及其医疗服务提供者都需要加大健康教育力度，以提高对美国儿科学会针对女性杜兴氏/贝克氏肌营养不良症携带者心脏护理指南的依从性。
