Parent-Reported Outcomes and Barriers to Care Among Children with Cleft Lip and Palate
Katelyn G. Bennett, MD, Kavitha Ranganathan, MD, Michaella S. Baker, BS, Christian J. Vercler, MD, Steven R. Buchman, MD, Jennifer F. Waljee, MD, MS.
University of Michigan, Ann Arbor, MI, USA.
PURPOSE: Access to quality health care remains an important public health problem in the United States. For children with cleft lip and/or palate (CLCP), ensuring access to specialty care is vital in order to optimize longitudinal speech, appearance, and psychosocial outcomes. Nonetheless, few studies have examined the differences in outcomes by perceived access to care. We sought to assess the relationship between perceived barriers to care and parent-reported outcomes in cleft care.
METHODS: We surveyed 60 parents presenting to our cleft clinic. Our primary outcomes included barriers to care as measured by the Barriers to Care questionnaire (BCQ), and parent-reported outcomes as measured by the Cleft Evaluation Profile (CEP). The BCQ includes 39 items, divided into five subscales: skills, marginalization, expectations, knowledge and beliefs, and pragmatics. Responses and associated scores include “no problem” (100), “small problem” (75), “problem” (50), “big problem” (25), and “very big problem” (0), with higher scores indicating fewer barriers. Means were calculated for the subscales and the entire BCQ. The CEP is a seven-item instrument that captures both appearance- and speech-related outcomes specific to CLCP, with higher scores corresponding to less satisfactory outcomes. A multivariable regression model was used to evaluate the relationship between barriers to care and parent-reported outcomes.
RESULTS: In this cohort, 60% of parents perceived some barrier to care, with 16% averaging below 90 on the BCQ. After controlling for covariates, we observed that BCQ scores were negatively correlated with CEP scores (-0.04, p=0.021), indicating a positive correlation between reduced barriers and improved parent-reported outcomes. Skills (p=0.032), expectations (p=0.038), and pragmatics (p=0.025) subscale scores were also negatively correlated with total CEP scores. Total BCQ (p=0.020), skills (p=0.033), expectations (p=0.032), and pragmatics (0.029) scores were also negatively correlated with aesthetic item scores. There was no correlation between BCQ scores and speech and hearing scores.
CONCLUSION: Increased barriers to care are correlated with poorer parent-reported aesthetic outcomes among patients with CLCP. Since it has been demonstrated that child CEP scores and parent CEP scores do not always correlate, it is imperative to increase access for affected parents in order to prevent parent perceptions of outcomes from inappropriately influencing care.
Back to 2018 Program