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Newborn screening for haemophilia : the views of families and adults living with haemophilia in the UK
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Boardman, Felicity K., Hale, Rachel and Young, Philip J. (2019) Newborn screening for haemophilia : the views of families and adults living with haemophilia in the UK. Haemophilia, 25 (2). pp. 276-282. doi:10.1111/hae.13706 ISSN 1351-8216.
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Official URL: https://doi.org/10.1111/hae.13706
Abstract
Introduction
As genomic sequencing become more efficient and cost‐effective, the number of conditions identified through newborn screening globally is set to dramatically increase. Haemophilia is a candidate condition; however, very little is known about the attitudes of the haemophilia community towards screening.
Aim
This study aimed to outline the perspectives of adults with haemophilia and their families towards newborn screening.
Methods
A paper and online survey on screening were distributed to every family known to the Haemophilia Society UK. Data collection occurred between January and June 2018. In total, 327 participants completed the survey: 76% were a relative of a person with haemophilia and 24% had haemophilia themselves; 83% were living with haemophilia A and 17% with haemophilia B.
Results
The vast majority supported newborn screening (77%) and preferred it to other forms of screening (preconception or prenatal). Participants supported newborn screening primarily because they viewed it as a means to facilitate early support and treatment, facilitate informed decisions about future pregnancies and prevent the “diagnostic odyssey.” The 23% who did not support the screen did not associate these particular benefits with newborn screening.
Conclusion
Haemophilia emerged from this analysis as a condition that the vast majority of participants considered a “liveable” disability and one best suited to newborn screening programmes that could improve support to affected families rather than reduce the birth rate of affected children.
| Item Type: | Journal Article | ||||||||
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| Subjects: | R Medicine > RC Internal medicine R Medicine > RJ Pediatrics |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Hemophilia, Newborn infants, Medical screening | ||||||||
| Journal or Publication Title: | Haemophilia | ||||||||
| Publisher: | Wiley-Blackwell Publishing Ltd. | ||||||||
| ISSN: | 1351-8216 | ||||||||
| Official Date: | March 2019 | ||||||||
| Dates: |
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| Volume: | 25 | ||||||||
| Number: | 2 | ||||||||
| Page Range: | pp. 276-282 | ||||||||
| DOI: | 10.1111/hae.13706 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Reuse Statement (publisher, data, author rights): | "This is the peer reviewed version of the following article: Boardman, FK, Hale, R, Young, PJ. Newborn screening for haemophilia: The views of families and adults living with haemophilia in the UK. Haemophilia. 2019; 25: 276– 282. https://doi.org/10.1111/hae.13706 which has been published in final form at https://doi.org/10.1111/hae.13706. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions." | ||||||||
| Access rights to Published version: | Restricted or Subscription Access | ||||||||
| Date of first compliant deposit: | 28 January 2019 | ||||||||
| Date of first compliant Open Access: | 28 February 2020 | ||||||||
| RIOXX Funder/Project Grant: |
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