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Rethinking strategies for positive newborn screening result delivery

NIHR-funded trial aims to improve the way that positive newborn screening results are communicated

by George Wigmore (Senior Communications Officer)

Researchers at City, University of London have been awarded an NIHR grant for £444,521 to improve the way that positive newborn screening results for conditions such as sickle cell disease and cystic fibrosis are communicated to parents by health professionals.

Each year about 800,000 babies in the UK have a ‘newborn screening’ blood test taken to screen for specific conditions, which if treated early will improve the child’s health and well-being.

In 2014-15, over 10,000 babies were identified as being affected or healthy carriers of a gene for one of the conditions screened for, which also includes metabolic diseases and hypothyroidism.

While parents’ agree to the blood test at the time of birth, many never expect a positive result with parents often complaining about the manner in which the news was communicated to them.

With the expansion of newborn screening in England, the importance of delivering this information appropriately to minimise any long-term negative health and psychological consequences is vital; this project aims to develop interventions to improve such communication.

Led by City researcher Dr Jane Chudleigh, the Rethinking Strategies for Positive Newborn Screening Result Delivery (ReSPoND) project also involves researchers from University of Liverpool, Sheffield Children’s Hospital, UCL (University College London), King’s College London, Great Ormond Street Hospital, Coventry University and the University of Manchester.

As part of the project, the researchers will work with parent representatives for each screened condition covered by newborn screening who will form an advisory group to assist the research team, provide feedback on each phase of the project and monitor its progress.

Following approvals, the research will take place in four phases:

  • Phase 1: Research team will examine how screening results are communicated from laboratories to parents in all parts of England for the screened conditions. This will help them understand differences in terms of current practices and associated benefits. It will also help identify which sites will be used for subsequent phases.
  • Phase 2: Parents and health professionals will work together to design the best way(s) to communicate positive newborn screening results. The research team will watch how results are delivered to parents and then ask parents and health professionals about their experiences in two study sites.  Following this the researchers will ask parents and health professionals to work together through a series of workshops to design interventions for the effective and sensitive communication of positive results to parents of affected children.
  • Phase 3: Researchers will start using the new approaches designed in Phase 2 in the two study sites and compare them to usual practice observed in Phase 2.  They will watch how the new approaches are used and ask parents and health professionals which approach they think is best, how it affects them and work out how much each will cost, who needs to be involved and any factors that may affect how well the approaches work in practice such as language barriers. They will compare costs associated with the new, co-designed interventions with existing practices described in Phase 1.
  • Phase 4: Future Directions - Information from the first three phases will be reviewed and plans made for a future study to evaluate the chosen approach.

Dr Jane Chudleigh, Senior Lecturer in Children's Nursing in the School of Health Sciences at City, University of London, said:

“With over 10,000 babies being identified each year as being affected or carriers for specific conditions such as sickle cell disease and cystic fibrosis, we need better communication strategiesto ensure that parents not only receive the correct information to improve the child’s health and wellbeing, but that they also receive it in a way which minimises any long-term negative health and psychological consequences. We hope that through this project we can develop interventions which will enable effective communication techniques to be adopted by health professionals when communicating with parents."

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