Parental attitudes toward newborn screening for Duchenne/Becker muscular dystrophy and spinal muscular atrophy

ABSTRACT 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 mus...

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Bibliographic Details
Published in:Muscle & nerve 2014-06, Vol.49 (6), p.822-828
Main Authors: Wood, Molly F., Hughes, Sarah C., Hache, Lauren P., Naylor, Edwin W., Abdel-Hamid, Hoda Z., Barmada, M. Michael, Dobrowolski, Steven F., Stickler, David E., Clemens, Paula R.
Format: Article
Language:English
Subjects:
Adult
Anxiety - psychology
Attitude to Health
Becker muscular dystrophy
Cohort Studies
Duchenne muscular dystrophy
Early Diagnosis
Emotions
Female
Health Surveys
Humans
Infant, Newborn
Male
Muscular dystrophy
Muscular Dystrophy, Duchenne - diagnosis
Muscular system
Neonatal Screening - psychology
newborn screening
parental attitudes
Parents - psychology
public health policy
Spinal Muscular Atrophies of Childhood - diagnosis
spinal muscular atrophy
Surveys and Questionnaires
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Summary:ABSTRACT 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, and SMA were surveyed and compared for 2 categories of parents, those with children affected with DMD, BMD, or SMA and expectant parents unselected for known family medical history. Results: The level of support for NBS for DMD, BMD, and SMA was 95.9% among parents of children with DMD, BMD, or SMA and 92.6% among expectant parents. Conclusions: There was strong support for NBS for DMD, BMD, and SMA in both groups of parents. Given advances in diagnostics and promising therapeutic approaches, discussion of inclusion in NBS should continue. Muscle Nerve 49: 822–828, 2014
ISSN:0148-639X
1097-4598
DOI:10.1002/mus.24100