Variation in the Desire for Cleft Revision Surgery among Children, Caregivers, and Surgeons.

BACKGROUND: Although revision surgery is part of the reconstructive process for children with cleft lip and/or cleft palate, the indications for revision vary, and the extent to which surgeons and families agree on appearance is unclear. The authors sought to understand the extent to which children with cleft lip and/or cleft palate, surgeons, caregivers, and control observers agree on satisfaction with appearance and the desire for revision. METHODS: Children with cleft lip and/or cleft palate (n = 100) and their caregivers (n = 100) were surveyed regarding satisfaction with appearance using the Cleft Evaluation Profile. Surgeons (n = 10) and control observers (n = 10) rated photographs of these children using questions analogous to the Cleft Evaluation Profile. General linear model repeated measures analysis of variance were used to detect significant differences between raters, with an alpha of 0.05. RESULTS: The children reported greater satisfaction with appearance across all domains compared with surgeons (nose, 7.77 versus 5.51, p < 0.001; lip, 7.94 versus 5.90, p < 0.001; maxilla, 8.16 versus 6.56, p < 0.001) and general observers (nose, 7.78 versus 6.00, p < 0.001; lip, 7.80 versus 6.12, p < 0.001; maxilla, 8.16 versus 7.40, p < 0.001). Children and caregivers expressed similar degrees of satisfaction with appearance of the lip (5.48 ± 1.69 versus 5.6 ± 1.49, p > 0.5) and maxilla (6.08 ± 1.1 versus 5.8 ± 1.2, p = 0.07). There was no significant relationship between children and surgeons in terms of the desire for revision surgery (p = 0.44). CONCLUSIONS: All groups expressed differing levels of satisfaction with cleft-specific aspects of appearance. Importantly, children were more satisfied than all other groups. Care must be taken to evaluate perceptions of all stakeholders before moving forward with cleft revision surgery.

Caregiver-Reported Outcomes and Barriers to Care among Patients with Cleft Lip and Palate.

BACKGROUND: For children with cleft lip and/or palate, access to care is vital for optimizing speech, appearance, and psychosocial outcomes. The authors posited that inadequate access to care negatively impacts outcomes in this population. METHODS: Sixty caregivers of children with cleft lip and palate were surveyed to assess perceived barriers using the validated Barriers to Care questionnaire. The questionnaire includes 39 items divided into five subscales, with higher scores indicating fewer barriers. Caregiver-reported outcomes were assessed using the Cleft Evaluation Profile, which captures cleft-specific appearance- and speech-related outcomes. Higher scores correspond to less satisfactory outcomes. Desire for revision surgery was assessed as a binary outcome among caregivers. Multivariable regression was used to evaluate the relationship of barriers to care, caregiver-reported outcomes, and desire for revision, adjusting for clinical and demographic covariates. RESULTS: Sixty percent of caregivers perceived barriers to care, and caregivers who reported poorer access to care described poorer cleft-related outcomes (r = 0.19, p = 0.024). Caregivers with poorer skills (r = 0.17, p = 0.037), expectations (r = 0.17, p = 0.045), and pragmatics (r = 0.18, p = 0.026) subscale scores were associated with worse Cleft Evaluation Profile scores. Barriers were also negatively associated with aesthetic item scores (r = 0.11, p = 0.025). Finally, caregivers reporting fewer barriers were 21.2 percent 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 cleft patients. Enhancing access to care is critical in order to effectively meet goals of care for these families.

Speech Perceptions and Health-Related Quality of Life Among Children With Cleft Lip and Palate.

BACKGROUND: The association between perception of speech and health-related quality of life (HRQOL) among patients with cleft palate is not well understood. The purpose of this study was to determine: the agreement between patient and parent perception of speech, the correlation between patient/parent speech perception and objective analysis by a speech-language pathologist (SLP), and the relationship between objective speech analysis and HRQOL among children with cleft lip with or without palate (CLCP). METHODS: The authors surveyed 108 CLCP patients who received treatment at a large tertiary medical center from 2013 to 2014. Patients and parents were queried regarding their difficulty with speech, and an SLP performed perceptual speech analysis with each patient. Patient-reported survey instruments were used to assess anxiety, depression, anger, peer relationships, stigma, and overall psychosocial health. The authors assessed the agreement between patients and SLP analysis as well as association between speech and HRQOL. RESULTS: Patient and parent-reported speech quality demonstrated moderate agreement regarding the quality of the child's speech (r = 0.46-0.64). Parent and patient speech perception was not well associated with SLP analysis (V = 0.06-0.30). Patient speech perception was correlated with depression (P = 0.03), while SLP analysis was correlated with anger (P = 0.03, P = 0.004), depression (P = 0.007), and difficulty with peer relationships (P = 0.02). CONCLUSIONS: Patients and parents have different perceptions of the quality of the child's speech, and their ratings differ from SLP perceptual speech analysis. Both patient speech perception and SLP analysis are correlated with important aspects of quality of life, and should be considered when evaluating children with CLCP.