More premature and critically ill infants are surviving than ever before. While this is exciting progress, many babies born early or with congenital anomalies have life-threatening medical conditions in the first months of life. An indwelling feeding tube (nasogastric or gastrostomy tube) is often used in the hospital to assure adequate growth and to administer medications in medically fragile infants. Use of feeding tubes is supposed to be temporary until children can learn to safely eat by mouth. However, many children end up being dependent on tube feeding for years due to compromised oral feeding development as an infant. It is estimated that nearly a quarter of children have some form of feeding disorder, increasing to approximately 80 percent in children with developmental delays. Tube feeding is helping save many children’s lives, yet research is lacking for transitioning from tube feeding to oral feeding. Additionally, the transition process often does not include patient/caregiver-centered outcomes. Minimizing social, emotional, health, and financial consequences of long-term tube feeding has the potential to greatly improve the quality of life for these children and their families.
Tier I project goals are:
- Engage patients/families, providers, researchers, nonprofit organizations, and other stakeholders in the Colorado Front Range region who are interested in improving the transition of tube feeding to oral feeding for children and their families
- Establish partnership name and governance structure
- Develop communication channels
- Determine next steps toward a future comparative effectiveness research question