Background: Home oxygen therapy has allowed preterm infants to be discharged from the neonatal intensive care unit sooner. However, there are no safe, proven ways to wean infants off home oxygen. Most doctors currently direct such weans on the basis of monthly clinic visits. Infants may have different oxygen levels between visits, but doctors and families do not have ways to include this in weaning decisions. Weaning without good information is stressful for doctors and families. Newer equipment can easily record children’s home oxygen levels in ways that can be sent to doctors. Consequently, weaning decisions can be made between clinic visits, on the basis of actual data about a child’s oxygen levels.
Objectives: This study will determine if home oxygen recording can improve oxygen weaning in infants. We will discover if this new process improves quality of life for families and shortens the time that infants stay on oxygen without increasing risks, compared with current weaning methods.
Methods: We will enroll 146 patients from several centers. Half of the infants will be randomized to routine weaning, done solely during monthly clinic visits. The rest of the infants will also have monthly clinic visits, but will in addition be given equipment to allow home oxygen recording between clinic visits. Every four to seven days, families can send data recorded from their child to the study doctors who will analyze the information and tell families whether they can wean. All families will complete surveys about their family experience during and after the weaning process. Infant growth and visits to the hospital for breathing problems will be recorded up to six months after the child is weaned off oxygen.
Patient Outcomes: Our primary goals in this study are to compare family quality of life and to see whether home recording can shorten the time that children need to stay on oxygen. We also will look at whether weaning strategies affect growth and breathing problems that require extra hospital visits.
Patient and Stakeholder Engagement: The idea for this project came directly from parents who have been through oxygen weaning with their children. Parents helped design the project and gave advice about how best to make equipment use simple and easy for families. To ensure that the project meets the needs of the many stakeholders, we also included pediatricians, lung doctors, and representatives from insurance companies and home care companies that provide monitors and oxygen to families.
Anticipated Impacts: The results will provide actual data about weaning methods to help doctors and families determine how best to wean infants from oxygen. The project can provide guidelines to help over 50,000 families each year. We expect that use of home recording will shorten the time spent on oxygen, decreasing cost and stress for many families. In cases where oxygen use is prolonged, families will better understand the reasons behind the weaning decisions. Data transfer between clinic visits may also help in other diseases that involve home oxygen.
Other Health Services Interventions
^ Lawrence Rhein, MD, was affiliated with Children's Hospital Boston when this project was initially awarded.