August 2006 : August 2006
Newborn Screening Programmes
Introduction: Introduction These slides bring you up to date with the three NSC Newborn Screening Programmes
The Blood Spot Programme
The Newborn Hearing Programme
The Newborn and 6-8 week Infant Physical Examination
Please refer back to the NSC GP resource for the ‘key messages’ from these programmes & for information relating to the antenatal screening programmes
The Blood Spot Programme: The Blood Spot Programme National newborn screening based on the blood spot sample with the aim of preventing serious, but rare conditions, through early treatment before symptoms develop.
The Newborn Blood Spot currently screens for:
Phenylketonuria (PKU)
Congenital Hypothyroidism (CHT)
Sickle cell disorders (SCD)* - linked to the
antenatal screening programme
Cystic fibrosis (CF)*
Other conditions within regional programmes
*screening in some areas - coverage increasing Blood Spot
Blood Spot National standards: Blood Spot National standards
Timely sample collection
Timely sample despatch
Completeness of coverage
Enhanced tracking abilities
Timely identification of babies for whom the laboratory has not received a decline notification or a blood sample
Timely processing of positive screening samples
Blood Spot
Do parents have a choice?: Do parents have a choice?
Screening is strongly recommended
Parents can decline screening for all or any of the conditions
They should be given information to make their choice
All discussions and decisions should be recorded
A parental signature is not required Blood Spot
How should the results be given if:: There is no cause for concern?
By the 6-8 week physical examination at the latest
A baby is thought to be affected by one of the 4
conditions or a carrier of sickle cell disease or CF?
As quickly as possible
By a well-informed health professional
In person, or by phone & followed up in person as soon as possible
Supported by written information
For affected babies with PKU, CHT or CF
With an appointment for diagnostic tests within 24 hours
How should the results be given if: Blood Spot
Information for Parents: Detailed information on the screened conditions are available to give to parents
Parent Info Information for Parents Blood Spot
Newborn Hearing Screening Programme (NHSP): Newborn Hearing Screening Programme (NHSP)
Aim is to identify moderate, severe and profound bilateral
deafness and hearing impairment in newborn babies
Programme offers all parents in England the opportunity to have
their baby’s hearing tested shortly after birth
Similar programmes are in place in Scotland, Wales and N Ireland
Early diagnosis enables earlier intervention which can lead to better outcomes through; family support, communication support or specific technology based intervention such as hearing aids or cochlear implants
Hearing
Why? The numbers in the UK : Hearing Why? The numbers in the UK Approx 900 children are born every year with a bilateral permanent childhood hearing impediment (PCHI)
There are degrees of hearing loss:
Profound -25%
Severe -25%
Moderate -50%
The Newborn Hearing Screening Test: The Newborn Hearing Screening Test The programme tests babies’ hearing using an Automated Otoacoustic Emissions test (AOAE). The test takes a few minutes only and is painless and safe
A second test – the Automated Auditory Brainstem Response (AABR) test may be offered if the AOAE test does not show a strong response in one or both ears
Babies who do not show strong responses to either above tests are referred to the local audiology department for further tests
Previously , an Infant Distraction Test (IDT) was used and as a result half of the children with a permanent hearing loss were not identified until they were 18 months old and a quarter not identified by three and a half years of age.
Risk factors of Hearing Loss : Hearing Risk factors of Hearing Loss
Slide12: This six minute online video is designed for parents, or anyone requiring a short introduction to hearing screening, and gives information about why and how babies are screened. Online video
A series of leaflets explaining the tests have been developed to support parents decide about screening and support information for parents of affected babies is also provided by the programme in partnership with the National Deaf Children’s Society. Available via http://www.nhsp.info/cms.php?folder=143 Hearing Parent Information
Newborn and 6-8 week physical examination: Newborn and 6-8 week physical examination Health For All Children (Hall, Elliman, 2003) recommends a physical examination is performed by 72 hours and again at 6-8 weeks
The aim of the newborn physical examination is to detect less obvious adverse conditions or abnormalities in a newborn child.
Newborn Physical
The examination includes:: The examination includes:
Taking a family history
Taking account of previous pregnancies & births
Taking an account of problems during the antenatal,
Perinatal and postnatal periods
Performing a physical examination of the baby
Listening to parental concerns Newborn Physical
Standards & Competencies: Standards & Competencies Standards
A draft standards document is being drawn together using expert working groups
Competencies
The subgroup recommends that any health professional undertaking the newborn and 6-8 week physical examinations should be competent to undertake the task and have sufficient ongoing clinical experience to maintain competency.
To support this a competency document for all health professionals is being agreed Newborn Physical
Future Programme Activity: Future Programme Activity
Training Resources
A web based digital toolbox is being developed to support training for the newborn and 6-8 week examinations for all health professional groups
Parent Information
This will be delivered as part of the programme of work
Information systems
Outputs from the standards document will inform the information requirements
These resources will be available via http://www.screening.nhs.uk/physical/index.htm
Newborn Physical
More information…including national coverage: About UK Newborn Blood Spot Screening Programme:
www.screening.nhs.uk/bloodspot
About Newborn Hearing Screening Programme:
www.screening.nhs.uk/hearing
About the Newborn and 6-8 week Infant Physical Examinations
www.screening.nhs.uk/physical
More information…including national coverage Please refer back to the NSC GP resource for the ‘key messages’ from these programmes & for information relating to the antenatal screening programmes
Thank you: Thank you