Screening the newborn for Duchenne muscular dystrophy: parents' views.
نویسندگان
چکیده
A short report is provided of an interview survey of 69 parents of boys suffering from Duchenne muscular dystrophy to determine their views of neonatal screening and their experiences at the time of diagnosis. Most of the parents favored screening in the neonatal period or in early infancy, and most of them expressed dissatisfaction with present delays, methods of disclosure, and subsequent support.
منابع مشابه
Parental attitudes toward newborn screening for Duchenne/Becker muscular dystrophy and spinal muscular atrophy.
INTRODUCTION Disease inclusion in the newborn screening (NBS) panel should consider the opinions of those most affected by the outcome of screening. We assessed the level and factors that affect parent attitudes regarding NBS panel inclusion of Duchenne muscular dystrophy (DMD), Becker muscular dystrophy (BMD), and spinal muscular atrophy (SMA). METHODS The attitudes toward NBS for DMD, BMD, ...
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Zellweger H, Antonik A. Newborn screening for Duchenne muscular dystrophy. Pediatrics 1975 ;55 :30-4. 2 Firth M, Gardner-Medwin D, Hosking G, Wilkinson E. Interviews with parents of boys suffering from Duchenne muscular dystrophy. Dev Med Child Neurol (in press). 3 Beckmann R, Scheuerbrandt G. Muskeldystrophie (Duchenne)Friiherkennung, CK-Screeningtest, Konsequenzen. Der Kinderarzt 1977;8 :313-...
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Purpose. The purpose of this study was to assess the desirability of Duchenne muscular dystrophy (DMD) screening, the effectiveness of the consent process, and the feasibility of conducting DMD screening in a pediatric office. Methods. Infant males who attended a 12-month routine well-child visit at a participating pediatric clinic were screened for DMD. Parents and providers completed post-scr...
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ورودعنوان ژورنال:
- British medical journal
دوره 286 6382 شماره
صفحات -
تاریخ انتشار 1983