Oral health-related quality of life in youth receiving cleft-related surgery: self-report and proxy ratings
- 345 Downloads
This paper evaluated the impact of cleft-related surgery on the oral health-related quality of life (OHRQoL) of youth with cleft over time.
Data were derived from a 5-year, multi-center, prospective, longitudinal study of 1196 youth with cleft lip and/or palate and their caregivers. Eligible youth were between 7.5 and 18.5 years old, spoke English or Spanish, and were non-syndromic. During each observational period, which included baseline, and 1- and 2-year post-baseline follow-up visits, youths and their caregivers completed the Child Oral Health Impact Profile, a validated measure of OHRQoL. Multilevel mixed-effects models were used to analyze the effects of receipt of craniofacial surgery on OHRQoL over time.
During the course of this study a total of 516 patients (43 %) received at least one surgery. Youth in the surgery recommendation group had lower self- (β = −2.18, p < 0.05) and proxy-rated (β = −2.92, p < 0.02) OHRQoL when compared to non-surgical self- and proxy-rated OHRQoL at baseline. Both surgical and non-surgical youth (β = 3.73, p < 0.001) and caregiver (β = 1.91, p < 0.05) ratings of OHRQoL improved over time. There was significant incremental improvement (time × surgery interaction) in self-reported OHRQoL for youth postsurgery (β = 1.04, p < 0.05), but this postsurgery increment was not seen in the caregiver proxy ratings.
Surgical intervention impacts OHRQoL among youth with cleft. Youth who were surgical candidates had lower baseline self- and caregiver-rated OHRQoL when compared to non-surgical youth. Youth who underwent cleft-related surgery had significant incremental improvements in self-rated but not caregiver (proxy)-rated OHRQoL after surgery.
KeywordsOral health-related quality of life Cleft lip/palate Longitudinal Patient-reported outcomes Caregiver (proxy) ratings
The authors recognize and thank the National Institutes of Health/National Institute for Dental and Craniofacial Research for supporting this research project, Quality of Life in Children with Cleft—DE018729 (H.L. Broder, PI). We appreciate the participation of the patients and their caregivers at the research sites. Lastly, we thank our research and clinical collaborators at New York University Langone Medical Center (R. Flores, PI), Children’s Hospital of Philadelphia (C. Crerand, D. Sarwer, PIs), Children’s Healthcare of Atlanta (J. Riski, PI), University of North Carolina, (M. Stein, PI); and University of Illinois at Chicago, (J. Rosenberg, PI).
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
Informed consent/assent was obtained from all individual participants included in the study.
- 1.Canfield, M. A., Ramadhani, T. A., Yuskiv, N., Davidoff, M. J., Petrini, J. R., Hobbs, C. A., et al. (2006). Improved national prevalence estimates for 18 selected major birth defects—United States, 1999–2001 (Reprinted from MMWR, vol 54, pg 1301–1305, 2006). Jama-Journal of the American Medical Association, 295(6), 618–620.CrossRefGoogle Scholar
- 7.Queiroz Herkrath, A. P. C. D., Herkrath, F. J., Rebelo, M. A. B., & Vettore, M. V. (2015). Measurement of health-related and oral health-related quality of life among individuals with nonsyndromic orofacial clefts: A systematic review and meta-analysis. Cleft Palate-Craniofacial Journal, 52(2), 157–172.CrossRefPubMedGoogle Scholar
- 13.Broder, H., & Strauss, R. P. (1989). Self-concept of early primary-school age children with visible or invisible defects. Cleft Palate-Craniofacial Journal, 26(2), 114–118.Google Scholar
- 15.Crerand, C. E., Sarwer, D. B., Kazak, A. E., Clark, A., & Rumsey, N. (2015). Body image and psychosocial functioning in adolescents with craniofacial conditions. The Cleft Palate-Craniofacial Journal (in press).Google Scholar
- 20.Danielsson, A. J., Wiklund, I., Pehrsson, K., & Nachemson, A. L. (2001). Health-related quality of life in patients with adolescent idiopathic scoliosis: A matched follow-up at least 20 years after treatment with brace or surgery. European Spine Journal, 10(4), 278–288.CrossRefPubMedPubMedCentralGoogle Scholar
- 23.Latal, B., Helfricht, S., Fischer, J. E., Bauersfeld, U., & Landolt, M. A. (2009). Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: A systematic review. BMC Pediatrics, 9(1), 6.CrossRefPubMedPubMedCentralGoogle Scholar
- 30.Long, R. E., Jr., Wilson-Genderson, M., Grayson, B. H., Flores, R. L., & Broder, H. L. (2015). Oral health related quality of life and self-rated speech in children with existing fistulas in mid-childhood and adolescence. The Cleft Palate-Craniofacial Journal. doi: 10.1597/15-123.
- 31.American Cleft Palate Association (1993). Parameters for the evaluation and treatment of patients with cleft lip/palate or other craniofacial anomalies (Revised Edition–November 2009). Cleft Palate-Craniofacial Journal, 30 (Suppl 1).Google Scholar
- 33.SAS Institute. (2014). Base SAS 9.4 procedures guide: Statistical procedures. Cary: SAS Institute.Google Scholar
- 35.Ruff, R. R., Broder, H. L., & Sischo, L. (2016). Minimally important difference of the child oral health impact profile for children with orofacial anomalies. Health and Quality of Life Outcomes (in press).Google Scholar
- 37.Broder, H. L., Flores, R. L., Clouston, S., Kirschner, R. E., Garfinkle, J. S., & Sischo, L., et al. (2015). Surgeon’s and caregivers’ appraisal of primary cleft lip treatment with and without nasoalveolar molding: A prospective multicenter pilot study. Plastic and Reconstructive Surgery. 137(3): 938–945.CrossRefGoogle Scholar
- 38.Bordo, S. (2003). Unbearable weight: Feminism, western culture, and the body. Berkeley: University of California Press.Google Scholar
- 39.Brumberg, J. J. (2010). The body project: An intimate history of American girls. New York: Knopf Doubleday Publishing Group.Google Scholar
- 48.US Department of Health and Human Services. (2000). Oral health in America: A report of the surgeon general. Rockville, MD: National Institute of Dental and Craniofacial Research.Google Scholar
- 50.Kirschner, R. E. (2015). President of the American Cleft Palate-Craniofacial Association. (Personal communication with Dr. Broder, June, 2015).Google Scholar