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Infants with Orofacial Clefts: Development and Validation of an Observer-Reported Outcomes Instrument (iCOO)

Infants with cleft lip with or without cleft palate (CL±P) can experience challenges with feeding, vocalizing, sleeping, hearing, breathing, and being active. For this reason, they often have surgical and non-surgical treatments. These treatments can include special bottles, molding of the lip and nose, taping of the lip, surgical repair, and placement of ear tubes. Even though there are treatment guidelines, there is still a lot we don't know about how well some of these treatments work.

While research studies have looked at some treatments, few have included a thorough assessment of child health. The cleft care community lacks common tools to learn about how these children develop over time. To find out more, we are working with parents, caregivers, and cleft team health care providers to create a questionnaire that can be used to evaluate and improve treatments for these young children.

The questionnaire we are creating is called the Infant Cleft Observer Outcomes Questionnaire, or "iCOO." The iCOO will be used by parents and other caregivers to provide information about their child's health and well-being based on observations they make of their child's feeding, vocalizing, sleeping, hearing, breathing, and activity. Our goal with the ICOO is to provide a uniform way for health care providers to find out how well treatments are working.

It takes a lot of people to help create iCOO

In order for the iCOO to be a good tool, it is important to have people from different backgrounds work together to develop and test the iCOO.