Objective: To evaluate the impact of a Cleft Nurse Navigator (CNN) program on care for patients with cleft lip and cleft palate and assess the programs efficacy to reduce existing socioeconomic disparities in care.
Design: Retrospective review and outcomes analysis (n = 739).
Setting: Academic tertiary care center.
Patients: All patients presenting with cleft lip and/or cleft palate (CL/P) born between May 2009 and November 2019 with exclusions for atypical clefts, submucous cleft palates, international adoption, and very late presentation (after 250 days of life).
Interventions: Multidisciplinary care coordination program facilitated by the CNN.
Main outcome measures: Patient age at first outpatient appointment and age at surgery, reported feeding issues, weight gain, and patient-cleft team communications.
Results: After CNN implementation, median age at outpatient appointment decreased from 20 to 16 days (P = .021), volume of patient-cleft team communications increased from 1.5 to 2.8 (P < .001), and frequency of reported feeding concerns decreased (50% to 35%; P < .001). In the pre-CNN cohort, nonwhite and publicly insured patients experienced delays in first outpatient appointment (P < .001), cleft lip repair (P < .011), and cleft palate repair (P < .019) compared to white and privately insured patients, respectively. In the post-CNN cohort, there were no significant differences in first appointment timing by race nor surgical timing on the basis of racial identity nor insurance type.
Conclusions: A variety of factors lead to delays in cleft care for marginalized patient populations. These findings suggest that a CNN can reduce disparities of access and communication and improve early feeding in at-risk cohorts.
Keywords: counseling; ethnics/health policies; feeding; nonsyndromic clefting; nursing; social support.