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Comparing Quality of Life and Perceptual Speech Ratings In Original Article The Cleft Palate-Craniofacial Journal 1-7 ª 2020, American Cleft Palate- Comparing Quality of Life and Perceptual Craniofacial Association Article reuse guidelines: Speech Ratings in Children With Cleft sagepub.com/journals-permissions DOI: 10.1177/1055665620949435 Palate journals.sagepub.com/home/cpc Hailey M. Pedersen, MS, CCC-SLP1, Paige A. Goodie, MS, CCC-SLP2, Maia N. Braden, MS, CCC-SLP1, and Susan L. Thibeault, MS, PhD, CCC-SLP1 Abstract Objective: To delineate the relationship between patient and parent-reported quality of life (QOL) ratings and perceptual characteristics of speech assigned by a speech-language pathologist (SLP) in children with repaired cleft palate. Design: Prospective. Setting: Academic Children’s Hospital. Participants: This population-based sample included children, aged 3 to 18 with a history of repaired cleft palate, and their parents. Intervention: Participants completed the Velopharyngeal Insufficiency Effects on Life Outcomes Questionnaire (VELO). Children’s speech was judged perceptually by an expert SLP using the Pittsburgh Weighted Speech Scale (PWSS). Main Outcome Measure(s): Velopharyngeal Insufficiency Effects on Life Outcomes questionnaire assessed participant and parent perceptions of impact of velopharyngeal function on QOL. Pittsburgh Weighted Speech Scale assessed nasal emissions, facial grimacing, nasality, quality of phonation, and articulation. Results: Enrollment included 48 participant parent dyads. Overall, participants reported high QOL scores within the 95% CI with children reporting slightly better yet not significantly different QOL (86.27 + 8.96) compared to their parents (81.81 + 15.2). Children received an average score of 1.38 + 1.96 on the PWSS corresponding to borderline velopharyngeal com- petence. A significant moderate negative correlation was found between PWSS total score and parent VELO total score (r ¼0.51103, P ¼ .0002). Mild–moderate significant negative correlations were measured between PWSS total and the 5 subscales of the VELO. No significant correlations were measured between PWSS and child VELO total responses or between total scores and subscales. Conclusions: Results suggest that as perceptual analysis of speech improves, overall QOL improves moderately. Keywords cleft palate, quality of life, speech Introduction congenital anomalies of the face (Kummer et al., 2012). Treat- ment for cleft lip/palate is surgical with the primary goal for Children with cleft lip/palate can have a range of communica- tion disorders, which have distinct impacts on children’s qual- ity of life (QOL), particularly related to psychosocial 1 Division of Otolaryngology–Head and Neck Surgery, University of functioning and development of peer relationships (Guralnick Wisconsin, Madison, Wisconsin, WI, USA et al., 1996). Children with communication disorders have been 2 Department of Otolaryngology, Vanderbilt University, Nashville, TN, USA shown to engage in active conversations less often, have lower rates of positive social behaviors, and be less successful in Corresponding Author: receiving appropriate responses to their social attempts (Gur- Susan L. Thibeault, Division of Otolaryngology–Head and Neck Surgery, University of Wisconsin, 5103 WIMR 1111 Highland Ave, Madison, WI alnick et al., 1996). Clefting of the lip and palate are some of 53705, USA. the more common birth anomalies and the most common Email: [email protected] 2 The Cleft Palate-Craniofacial Journal XX(X) these children to obtain normal speech and resonance; how- Previous research on children with cleft lip/palate has been ever, rates reported for velopharyngeal insufficiency (VPI) focused on their QOL, their speech characteristics, or how have ranged from 10.3% (Mahoney et al., 2013) to 25.6% peers/adults perceive their speech, with very little to none look- (McCrary et al., 2020), with rates as high as 32% for 2- ing into the relationship between QOL and speech characteris- staged repairs (McCrary et al., 2020). tics. The purpose of this study was to investigate the Velopharyngeal insufficiency typically causes hypernasal- relationship between QOL in children aged 3 to 18 with history ity, which negatively impacts social interaction, even in chil- of repaired unilateral/bilateral cleft lip/palate, cleft palate only, dren with mild hypernasality (Watterson et al., 2013). Research cleft of the soft palate only, and submucous cleft palate and has shown that children with a history of cleft lip/palate are perceptual speech characteristics. To measure QOL we utilized more likely to be teased by their peers, demonstrating further the VELO QOL instrument. This is a 23-item VPI-specific the potential psychosocial consequences of anxiety, self- QOL instrument with 6 domains, including speech limitations, esteem, depression, and behavioral problems (Hunt et al., swallowing problems, situational difficulty, emotional impact, 2007). Barr et al. (2007) concluded in their study of QOL in perception by others, and caregiver impact (Skirko et al., children with VPI that those with VPI and their parents 2012). This study was designed to investigate whether QOL reported a greater degree of impact to QOL as compared to of the participants, as measured by parent proxy reported (and age-matched peers without VPI. Bruneel and colleagues (2019) self-reported, if over 8 years) VELO scores, correlate with found that more negative speech outcomes were associated quantitative perceptual analysis of speech and if there is a with more negatively impacted QOL in children with VPI. correlation between certain features of speech (including nasal QOL has been found to improve following speech surgery in air emission, facial grimace, nasality/resonance, phonation/ patients with VPI (Bhuskute et al., 2017). Both patient and voice, and articulation) as measured by the Pittsburgh parent-reported health related QOL scores were found to be Weighted Speech Scales (PWSS). Our hypothesis was that worse in children with moderately to severely impacted speech children with more severely affected speech would have lower (Bickham et al., 2017). Taken together, speech production has QOL measures. an effect on QOL in children with cleft palate. Although research connecting perceived speech character- istics (ie, nasal air emissions, nasality, and articulation) and Methods QOL in children with cleft lip/palate is sparse, research specific to the impact of voice disorders on QOL has shown that chil- Study Design dren with voice disorders (ie, vocal fold nodules, vocal fold After obtaining approval from the institutional review board, paralysis, or paradoxical vocal fold motion) demonstrate a sta- we began prospective enrollment of participants aged 3 to tistically significant negative impact in their QOL as reported 18 years with history of a repaired palate (hard, soft, or sub- by both children and parents (Merati et al., 2008). Use of parent mucous), repaired at least 6 months prior to consent, who were proxy reports has been shown to be necessary for young chil- identified during their standard of care appointment with the dren as parents are thought to have a better understanding of Cleft and Craniofacial Anomalies Clinic. Informed consent their child’s problem, and parental concern is often the primary was obtained from parents or legal guardians and children older factor for decision-making regarding treatment (Boseley et al., than the age of 15 years, with assent obtained from children 2006; Watterson et al., 2013). Parent proxy reports have also aged 8 to 14 years. Parents acted as proxy and completed the been shown to reliably capture the QOL impact on children VELO about their child’s condition and QOL regardless of (Eckstein et al., 2011). In a study, on oral health-related QOL in their child’s age. Children older than the age of 8 years com- Ethiopian children born with orofacial clefts and their parents, pleted the VELO on their own in addition to the parent proxy. no significant difference was found in overall scores obtained Participation was voluntary and no compensation was provided from children and those obtained by parent proxy (Abebe et al., for participation. Exclusion criteria included children and/or 2018). Additionally, in a study designed to determine whether parents who were non-English speaking, children with a con- QOL is altered in children between the ages of 5 and 17 years firmed syndrome diagnosis, children with severe intellectual as measured by the Velopharyngeal Insufficiency Effects on disability, and/or children with a reading delay that would place Life Outcomes questionnaire (VELO) questionnaire as well as him or her below a third grade reading level confirmed by assess parent proxy and child agreement, Barr et al. (2007) parent/guardian. found no significant difference between parents and children’s judgment of the effects of speech limitations to QOL. They did, however, find that parent and child perceptions had some Data Collection degree of variance in that parents reported a lesser degree of Data points of interest included participant demographics (ie, impact of VPI on swallowing and an elevated degree of emo- age, gender, diagnosis, age at initial repair, revision surgical tional impact on their child’s QOL as compared to child self- history), VELO subscores and total scores for parents and chil- reports (Barr et al., 2007). Conversely, Bickham and colleagues dren older than 8 years, and perception of various speech char- found good agreement between parent and child reports
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