Newborn screening for Duchenne muscular dystrophy: a psychosocial study

Parsons, Evelyn; Clarke, Angus; Hood, Kerenza; Lycett, Emma Jane; Bradley, Don M.

doi:10.1136/fn.86.2.f91

Cited by 89 publications

(97 citation statements)

References 18 publications

(12 reference statements)

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“…Overall, Parsons found no evidence of rejection from either assessment by a health visitor or mothers' responses to the rejection/protection index. There was also no difference in protectiveness during the first year of life (Parsons, 2002).…”

Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 81%

“…The authors concluded that the majority of parents in both cohorts were in favor of the earlier diagnosis for the emotional and practical reasons mentioned above (Parsons, 2002).…”

Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 95%

“…It could also be potentially confusing to present the NBS for DMD as an optional screen, when other NBS programs are essentially mandatory (Kemper, 2007). Additionally, there is the possibility of lingering doubt over the accuracy of a false positive result (Parsons, 2002), which occurred in 2 out of 20 parents of the cohort that tested positive on the primary screen, but were then found to be negative on secondary screen. However, this occurred when informed consent for NBS for DMD had not been optimal (Parsons, 2002).…”

Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 99%

“…Additionally, there is the possibility of lingering doubt over the accuracy of a false positive result (Parsons, 2002), which occurred in 2 out of 20 parents of the cohort that tested positive on the primary screen, but were then found to be negative on secondary screen. However, this occurred when informed consent for NBS for DMD had not been optimal (Parsons, 2002). Researchers have also cited the possibility of anxiety or impaired bonding with infants who are identified as affected with DMD through NBS (Bradley, 1993).…”

Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 99%

“…During the implementation of an optional NBS for DMD in Wales, Parsons et al (2002) did a psychosocial study into parents' opinions of screening and found several themes regarding the perceived advantages and disadvantages of NBS for DMD. This study used three of the most popular advantages (reproductive choice/family planning, time to prepare, and early diagnosis) and three of the most popular disadvantages (decision regret, parent-child bonding, and anxiety) to determine which factors are the most influential in parents' opinions toward NBS for DMD/BMD/SMA.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2014

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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

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Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 81%

“…The authors concluded that the majority of parents in both cohorts were in favor of the earlier diagnosis for the emotional and practical reasons mentioned above (Parsons, 2002).…”

Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 95%

Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 99%

Section: Nbs Is a Well-established Public Health Initiative With Strumentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

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

et al. 2014

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Newborn Screening Programs

Parsons

Bradley

2006

Encyclopedia of Life Sciences

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Newborn Screening Programmes

Parsons¹,

Bradley²

2008

Encyclopedia of Life Sciences

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Newborn screening programmes are used to detect diseases in neonates by analysing a blood sample collected by heel‐prick, usually during the first week of life. Whereas early programmes were started with the aim of preventing mental retardation, advances in technology now mean that a variety of disorders, where treatment is more problematic, or even nonexistent, can be identified. This has broadened the scope of newborn screening and presents service providers with an increasing need to address issues about consent.

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Newborn screening for Duchenne muscular dystrophy: a psychosocial study

Cited by 89 publications

References 18 publications

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

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

Newborn Screening Programs

Newborn Screening Programmes

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