Exploring Parents’ & Health Professionals’ Experiences of Screening for Severe Combined Immunodeficiency
Some countries have introduced newborn screening for Severe Combined Immunodeficiency (SCID) and modelling suggests it is probably cost effective in the UK setting. However, there is some uncertainty about this and questions remain unanswered relating to its potential introduction in the UK.
This project will evaluate the impact of including SCID into the newborn screening panel. It will recruit parents and health professionals primarily from the sites where this new form of screening is being trialled (Manchester, Sheffield, Newcastle, Birmingham, South-East and South-West Thames, & Great Ormond Street), as well as additional sites where clinicians will be involved in the care of these babies and comparator groups, are needed including Nottingham, Leicester and Liverpool.
The proposed work will consist of two work packages. The first was a mixed-methods study conducted with families from the point of screening information being returned through to the child’s fifth birthday. The second is a qualitative interview study conducted with health professionals during the clinical evaluation phase of the national pilot programme.
Aims
Family Study
- Explore effects on families whose babies received a positive SCID result
- Compare the above views with families who received a false positive result
- Compare the quality of life of children with SCID whose diagnosis was reached by screening, family history or symptomatic presentation
- Measure quality of life of families of children with secondary or syndromic T cell lymphopenia
- Measure quality of life and screening experience of children with idiopathic T cell lymphopenia compared with families of children diagnosed with CFSPID
Health Professional Study
- Explore views of midwives, immunologists and clinical nurse specialists
Methods
SCID consists of two work packages. The first, a mixed-methods study, the second, a qualitative interview study.
Effective start/end date: 01/12/2021 - 31/03/2029
Work Package 1: Family study.
This WP will deliver Project deliverable 1: The effects on families whose babies had a positive screening test (low TRECs). This will include babies with a normal result on flow cytometry, as well as those with a result suggesting they have SCID or another disorder affecting their immune system.
Work Package 2: Interviews with health professionals.
This work package will deliver Project deliverable 2: The views and experiences of a sample of midwives who gained consent and took the initial blood sample.
It will also deliver Project deliverable 3: The views and experiences of the immunologists/clinical nurse specialists who saw the families at the time of flow cytometry.
Effective start/end date: 01/12/2021 - 31/03/2029
Work Package 1: Family study.
This WP will deliver Project deliverable 1: The effects on families whose babies had a positive screening test (low TRECs). This will include babies with a normal result on flow cytometry, as well as those with a result suggesting they have SCID or another disorder affecting their immune system.
Work Package 2: Interviews with health professionals.
This work package will deliver Project deliverable 2: The views and experiences of a sample of midwives who gained consent and took the initial blood sample.
It will also deliver Project deliverable 3: The views and experiences of the immunologists/clinical nurse specialists who saw the families at the time of flow cytometry.
Our Partners
Principal Investigators
Jane Chudleigh
Senior Lecturer (Research & Teaching) in Child Health
Fiona Ulph
Principal Investigator
Investigators
Simon Dixon
Investigator
Jim Chilcott
Investigator
Louise Moody
Investigator
Ellinor Olander
Investigator
Affiliations
Funding
Funding Body: NHS England and NHS Improvement (NHSE/I)
Amount: £300,000
Period: November 2021 - March 2029