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Quality of life among children with cleft lips and palates: a critical review of measurement instruments

BACKGROUND: Multidisciplinary teams that treat patients with cleft lips and palates seek to promote quality of life (QoL) in this population. In this study, we aim to identify instruments in the literature that can be used to assess comprehensive aspects of QoL (related to functionality, aesthetics, and outcomes) for this population. METHODS: We searched literature on PubMed published between 2001 and 2011 for specific instruments used to evaluate QoL among cleft lip and palate patients using the following keywords: quality of life & oral cleft, quality of life & craniofacial deformities, quality of life & oral cleft speech, voice related quality of life. RESULTS: We identified 457 papers related to the subject and evaluated the following specific pediatric instruments for assessing QoL among cleft lip and palate patients: Quality of Life Instrument - Craniofacial Surgery (YQOL-CS), Youth Quality of Life Instrument-Facial Differences (YQOL-FD), Child Oral Health Quality of Life Questionnaire (COHQOL), Child Oral Health Impact Profile (COHIP), Pediatric Voice Outcome Surgery (PVOS) and Pediatric Voice-Related Quality of Life Survey (PVRQOL). CONCLUSIONS: No pediatric QoL instrument exists in the current literature that comprehensively evaluates children with cleft lips and palates, including aspects related to aesthetics, conceptual and perceptual consequences, and functionality (chewing and respiratory systems, and vocal resonance) associated with this important congenital craniofacial anomaly.

Quality of life; Cleft palate; Cleft lip; Craniofacial abnormalities


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