Primary Care Physicians' Knowledge of and Experiences with Chidren with Oral Clefts

The UI Public Policy Center, in collaboration with the National Foundation for Facial Reconstruction (NFFR), the State of NY Birth Defects Registry, and the Arkansas Birth Defects Registry, has developed a survey for primary care physicians in New York, Iowa and Arkansas to evaluate their experience caring for children with oral clefts, as well as their comfort providing needed services and ability to refer to appropriate providers when necessary.

This study aims to provide population-based data on the degree to which primary care physicians in Iowa, New York and Arkansas:
1) provide care for children with clefts of the lip and/or palate,
2) feel comfortable providing services and referrals for these children and their parents,
and 3) feel their training and education prepared them adequately to care for children with clefts.

Many children with oral clefts receive treatment from cleft palate teams in Centers that specialize in a multi-disciplinary approach to caring for the physical and psychosocial needs of these children. However, relatively little is known about the type and quality of care that is available for these children back in their home communities, especially by their primary care physicians. As open communication between primary care providers and cleft care specialists is considered crucial to optimal care, it is important to understand the experiences and comfort level of primary care providers in providing both general and cleft-related health care to these children and how they view their role in a team approach to cleft care.