Quantifying Household Impact on Patient Outcomes and Costs in Preterm Babies With and Without Necrotising Enterocolitis: A Study Alongside the WHEAT Trial

What this Trial Is About

Researchers are studying how caring for very premature babies, especially those affected by necrotising enterocolitis (NEC), impacts families during the first year after the baby leaves the hospital. NEC is a serious bowel condition often requiring surgery and long hospital stays. This observational study is part of the WHEAT International Trial, which looks at feeding practices during blood transfusions and their effect on NEC risk in very preterm infants. PREM-IMPACT aims to assess the financial, emotional, and social effects on families and help guide neonatal care policies. The study involves families of babies born before 30 weeks gestation, including those who developed NEC and those who did not. Families are recruited from neonatal units when their baby is ready for discharge. Data is collected through questionnaires completed at three time points: just before hospital discharge, six months later, and twelve months later. These questionnaires cover infant health, family wellbeing, healthcare use, and costs such as travel, time off work, and additional care needs. Participants provide information on infant health-related quality of life, healthcare resource use, and household financial impact. The study also evaluates parental and sibling wellbeing. A research nurse coordinates follow-up centrally to support families throughout the study. The results will measure the burden of prematurity and NEC on families and contribute to understanding the cost-effectiveness of feeding strategies during transfusions, with total participation lasting about one year after discharge.

Health-Related Quality-of-Life and Household Financial and Wellbeing Impacts of Prematurity and Necrotising Enterocolitis (NEC).