Background
For children with cleft lip and/or palate (CLCP), access to care is vital for optimizing speech, appearance, and psychosocial outcomes. The authors posited that that inadequate access to care negatively impacts outcomes in the CLCP population.
Methods
Sixty caregivers of children with CLCP were surveyed to assess perceived barriers using the validated Barriers to Care questionnaire (BCQ). The BCQ includes 39 items divided into five subscales, with higher scores indicating fewer barriers. Caregiver reported outcomes (CROs) were assessed using the Cleft Evaluation Profile (CEP), which captures CLCP specific appearance- and speech-related outcomes. Higher scores correspond to less satisfactory outcomes. Desire for revision surgery was assessed as a binary outcome amongst caregivers. Multivariable regression was used to evaluate the relationship between barriers to care, CROs, and desire for revision, adjusting for clinical and demographic covariates.
Results
60% of caregivers perceived barriers to care, and caregivers who reported poorer access to care described poorer cleft-related outcomes (r2=0.19, p=0.024). Caregivers with poorer Skills (r2=0.17, p=0.037), Expectations (r2=0.17, p=0.045), and Pragmatics (r2=0.18, p=0.026) subscale scores were associated with lower CEP scores. Barriers were also negatively associated with aesthetic item scores (r2=0.11, p=0.025). Finally, caregivers reporting fewer barriers were 21.2% less likely to express interest in revision surgery.
Conclusions
Barriers to care were associated with poorer appearance-related outcomes and increased interest in revision among caregivers of patients with CLCP. Enhancing access to care is critical in order to effectively meet goals of care for these families.