neoOUTCOMES: Pilot Stages (neoOUTCOMES: Pilot Stages)

• Research type

  Research Study

• Full title

  Understanding the healthcare burden of illness in moderate-, late-preterm, and term neonates: pilot stages

• IRAS ID

  325606

• Contact name

  James Webbe

• Contact email

  james.webbe@nhs.net

• Sponsor organisation

  Imperial College London

• Duration of Study in the UK

  1 years, 0 months, 1 days

• Research summary

  Each year in the UK 650,000 babies are born after 32 weeks of pregnancy. These babies are at higher risk of health problems and do less well at school. By linking routinely collected data we plan to map the care these babies are given after birth, identify how it affects long-term outcomes, and how it could be improved in a research project called neoOUTCOMES.

  Preparatory work includes a descriptive study and stakeholder engagement project detailed below.

  AIMS
  The descriptive study will describe which babies born after 32 weeks are admitted to neonatal units in England and Wales, what affects whether a baby is admitted, and what outcomes these babies have.

  The stakeholder engagement project will determine viewpoints of former patients, parents, and wider society to data linkage in the neoOUTCOMES project.

  IMPORTANCE
  This is the first stage of the neoOUTCOMES project which will identify the best way to manage babies born after 32 weeks.

  For the first time, the descriptive study will map the care and outcomes for all admitted babies. The stakeholder engagement project will show whether data linkage for neoOUTCOMES is acceptable.

  METHODS
  The descriptive study will use the National Neonatal Research Database to study babies born after 32 weeks from 2015-2022. We will describe which babies were admitted and their outcomes (e.g. bloodstream infection).

  For the stakeholder engagement project, focus groups will discuss the project and co-create a survey. Then participants will complete the survey exploring perspectives to data linkage. Finally, in-depth interviews will be held with survey participants who are unhappy with the planned work to understand potential barriers.

  FUNDING
  This work is funded by charitable funding from CW+.

  RECRUITING
  For the descriptive study no participants will be recruited. For the stakeholder engagement recruitment will mainly be through social media adverts.

• REC name

  Wales REC 7

• REC reference

  24/WA/0028

• Date of REC Opinion

  30 Jan 2024

• REC opinion

  Favourable Opinion