Current Ear and Hearing Care Practices for Infants and Toddlers with Cleft Palate in the United States

Objective: To examine ear and hearing clinical practices across American Cleft Palate-Craniofacial Association (ACPA) approved teams in the United States.

Design: Multi-site prospective, observational, longitudinal study.

Setting: Seventeen Cleft Palate Teams in the United States.

Patients, participants: Children with cleft palate, with or without cleft lip (CP ± L), born between 2015 and 2022, evaluated by 18 months (n = 1246).

Interventions: None.

Main outcome measure(s): Standard of care otolaryngology and audiology appointments evaluated in the context of whether otolaryngology and audiology services were provided as embedded care within the team visit or as ancillary services.

Results: Over 71% of infants passed newborn hearing screening (NBHS). By age 18 months, only 40% of infants received audiologic follow-up while 93.6% of children received otolaryngology care. Follow-up was significantly better for infants served by teams with embedded providers versus those who refer families for ancillary services; the odds of seeing an audiologist by 18 months were three times as high among participants seen by teams with embedded audiology (OR = 3.25; CI = 2.0, 5.2) while those seen by teams with embedded otolaryngologists had more than double the odds of seeing an otolaryngologist by 18 months (OR = 2.2; CI = 1.5, 3.2).

Conclusions: There is considerable variability across ACPA-approved centers in the US regarding the timing and completion of otolaryngology and audiologic follow-up for children with CP ± L. This study highlights the importance of following established standards of care and the impact that team composition and access to clinical services can have on equity of care.