Rethinking Strategies for Positive Newborn Screening Result Delivery
Research type
Research Study
Full title
Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND): a process evaluation of co-designing interventions to minimise impact on parental emotional well-being and stress.
IRAS ID
231291
Contact name
Jane Chudleigh
Contact email
Sponsor organisation
City, University of London
Clinicaltrials.gov Identifier
Pending, ISRCTN ; Pending, NIHR Portfolio; 16/52/25, NIHR HS&DR
Duration of Study in the UK
2 years, 5 months, 31 days
Research summary
Summary of Research
Title: Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND)
Background:
Each year about 800,000 babies in the UK have a blood test taken (called newborn bloodspot screening (NBS) to screen for specific conditions, which if treated early will improve the child’s health and well-being. In 2015-16, over 10,000 babies were identified as being affected or healthy carriers of a gene for one of the conditions screened for, which include sickle cell disease, cystic fibrosis, metabolic conditions and hypothyroidism. When a positive result occurs, a variety of ways are used to deliver the result but many parents complain about the approaches used.Our Aim: For parents and health professionals to work together to design interventions to facilitate effective communication of positive NBS results to parents by health professionals.
The research takes place in four phases:
Phase 0: Gaining the necessary approvals to do the work
Phase 1: We will find out how NBS results are communicated from laboratories to parents in all parts of England for the screened conditions.
Phase 2: Parents and health professionals will work together to design the best way(s) to communicate positive NBS results. We will watch how NBS results are delivered to parents and then ask parents and health professionals about their experiences in two study sites. We will ask parents and health professionals to work together through a series of workshops to design approaches (interventions) for the effective and sensitive communication of positive NBS results.Phase 3: We will start using the new approaches designed in Phase 2 in two study sites and compare them to usual practice observed in Phase 2 in terms of usability and cost.
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.Summary of Results
Parents and health care professionals worked together to design strategies (interventions) to promote effective communication of positive newborn bloodspot (‘heel prick’) screening results.
Results indicated that health care professionals are aware of the importance of clearly communicating positive screening results to families. Difficulties were evident when positive screening results were communicated from laboratories to clinical teams; particularly for congenital hypothyroidism. Health care professionals were committed to making sure communication is done well, but variations in practice existed. This variation was influenced by many factors including resources available and lack of clear guidance. When the new strategies were tried out in practice, most health care professionals and parents interviewed thought they helped improve communication of positive screening results. However, various barriers including organisational and contextual factors were identified that made these difficult to use in practice. A cost analysis indicated that the new strategies would not cost the NHS more and could be cost-saving when delivered by teleconsultations.REC name
London - Stanmore Research Ethics Committee
REC reference
17/LO/2102
Date of REC Opinion
22 Feb 2018
REC opinion
Further Information Favourable Opinion