Qualidade de vida de crianças com fissura labiopalatina: análise crítica dos instrumentos de mensuração

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.

[1]  H. Schliephake,et al.  Quality of Life in School-Age Children With Orofacial Clefts and Their Families , 2009, The Journal of craniofacial surgery.

[2]  D. Patrick,et al.  Measuring the Quality of Life of Youth with Facial Differences , 2007, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[3]  C. Hartnick,et al.  Validation of the Pediatric Voice-Related Quality-of-Life survey. , 2006, Archives of otolaryngology--head & neck surgery.

[4]  G. Guyatt,et al.  Short forms of the Child Perceptions Questionnaire for 11–14-year-old children (CPQ11–14): Development and initial evaluation , 2006, Health and quality of life outcomes.

[5]  F. Watzinger,et al.  Evaluation of Esthetic, Functional, and Quality-of-Life Outcome in Adult Cleft Lip and Palate Patients , 2005, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[6]  D. Aizenbud,et al.  Congenitally Missing Teeth in the Israeli Cleft Population , 2005, The Cleft Palate-Craniofacial Journal.

[7]  D. Patrick,et al.  Approaches to Craniofacial-Specific Quality of Life Assessment in Adolescents , 2005, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[8]  J. Mulliken.  The changing faces of children with cleft lip and palate. , 2004, The New England journal of medicine.

[9]  W. Shaw,et al.  Photogrammetric assessment of the soft tissue profile in unilateral cleft lip and palate. , 2002, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[10]  G. Guyatt,et al.  Validity and Reliability of a Questionnaire for Measuring Child Oral-health-related Quality of Life , 2002, Journal of dental research.

[11]  W. Shaw,et al.  The Eurocleft project 1996-2000: overview. , 2001, Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery.

[12]  R. Sader,et al.  [Quality of life research in patients with cleft lip and palate: preliminary results]. , 1999, Mund-, Kiefer- und Gesichtschirurgie : MKG.

[13]  Guilherme Bergmann Borges Vieira,et al.  Aplicação da versão em português do instrumento de avaliação de qualidade de vida da Organização Mundial da Saúde (WHOQOL-100) , 1999 .

[14]  R. Strauss.  Cleft Palate and Craniofacial Teams in the United States and Canada: A National Survey of Team Organization and Standards of Care , 1998, The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association.

[15]  D. Harper.  Children's attitudes to physical differences among youth from Western and non-Western cultures. , 1995, The Cleft Palate-Craniofacial Journal.

[16]  K. Okazaki,et al.  Speech and Velopharyngeal Function Following Maxillary Advancement in Patients with Cleft Lip and Palate , 1993, Annals of plastic surgery.