Dataset Information

Medical Attitudes Survey for Female Dystrophinopathy Carriers in Japan.

ABSTRACT: Objective This study attempted to clarify the current status of female dystrophinopathy carriers, including the numbers of patients, the status of genetic screening, the status of counseling, physicians' understanding, and barriers to registration. Methods We sent out questionnaires to 402 physicians registered in the Remudy dystrophinopathy registry. The total number of responses received was 130 (response rate: 32%). Result In total, 1,212 cases of Duchenne muscular dystrophy, 365 cases of Becker muscular dystrophy, and 132 cases of female dystrophinopathy with a confirmed genetic mutation were encountered, and genetic testing was performed in the mother in 137, 23, and 12 cases, respectively. With respect to the risk of the onset of health problems, 25% of physicians always explained, 29% usually explained, 29% sometimes explained, and 13% never explained the risk to the mothers and female siblings of dystrophinopathy patients. The most common reason for not explaining the risk was a lack of knowledge/information. Thirty-five percent were familiar with the guidelines for testing the heart function of carriers. Conclusion Fewer mothers of dystrophinopathy patients have undergone genetic testing in Japan than in other countries. A significant portion of doctors did not explain the risks of health problems due to a lack of knowledge. We hope this survey will lead to an increased discussion of female dystrophinopathy patients.

SUBMITTER: Kobayashi M

PROVIDER: S-EPMC6148176 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Medical Attitudes Survey for Female Dystrophinopathy Carriers in Japan.

Kobayashi Michio M Hatakeyama Tomoyuki T Ishizaki Masatoshi M Adachi Katsuhito K Morita Mizuki M Yonemoto Naohiro N Matsumura Tsuyoshi T Toyoshima Itaru I Kimura En E

Internal medicine (Tokyo, Japan) 20180309 16

Objective This study attempted to clarify the current status of female dystrophinopathy carriers, including the numbers of patients, the status of genetic screening, the status of counseling, physicians' understanding, and barriers to registration. Methods We sent out questionnaires to 402 physicians registered in the Remudy dystrophinopathy registry. The total number of responses received was 130 (response rate: 32%). Result In total, 1,212 cases of Duchenne muscular dystrophy, 365 cases of Bec ...[more]

PMID: 29526935

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Project description:BACKGROUND:Relatively little is known about American medical student's attitudes toward caring for the uninsured, limiting physician reimbursement and the role of cost-effectiveness data in medical decision-making. We assessed American medical student's attitudes regarding these topics as well as demographic predictors of those attitudes, and compared them to practicing physicians. METHODS AND FINDINGS:A survey instrument was explicitly designed to compare medical student attitudes with those previously reported by physicians. Between December 1st 2010 and March 27th 2011 survey responses were collected from more than 2% of the total estimated 2010-2011 US medical student population enrolled at 111 of 159 accredited US medical schools within the 50 United States (n = 2414 of possible 98197). Medical students were more likely to object to reimbursement cuts, and more likely to object to the use of cost effectiveness data in medical decision making than current physicians according to the literature. Specialty preference, political persuasion, and medical student debt were significant predictors of health policy attitudes. Medical students with anticipated debt in excess of $200,000 were significantly less willing to favor limiting reimbursement to improve patient access (OR: 0.73 [95% confidence interval (CI): 0.59-0.89]), and significantly more likely to object to using cost effectiveness data to limit treatments (OR 1.30, 95% CI 1.05-1.60) when compared to respondents with anticipated debt less than $200,000. CONCLUSIONS:When compared to physicians in the literature, future physicians may be less willing to favor cuts to physician reimbursements and may be more likely to object to the use of cost effectiveness data. Political orientation, specialty preference and anticipated debt may be important predictors of health policy attitudes among medical students. Early career medical providers with primary care ambitions and those who anticipate less debt may be more likely to support healthcare cost containment.

Dataset Information

Medical Attitudes Survey for Female Dystrophinopathy Carriers in Japan.

Publications

Medical Attitudes Survey for Female Dystrophinopathy Carriers in Japan.

Similar Datasets

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