TY - JOUR
T1 - Quality-of-Life in Children with Orofacial Clefts and Caregiver Well-being
AU - Sischo, L.
AU - Wilson-Genderson, M.
AU - Broder, H. L.
N1 - Funding Information:
This research was supported by NIH/NIDCR grants R01 DE018729 and R21 DE021853 (H. Broder, PI). We thank the research PIs and clinical members at our study sites: Children’s Healthcare of Atlanta (Dr. John Riski, PI), Children’s Hospital of Philadelphia (Drs. Canice Crerand and David Sarwer, PIs), Lancaster Cleft Palate Clinic (Dr. Ross Long, PI), Mercy Children’s Hospital (Dr. Jeffrey Marsh, PI), New York University Langone Medical Center (Drs. Barry Grayson and Roberto Flores, PIs), Oregon Health and Science University (Dr. Judah Garfinkle, PI), Riley Hospital for Children (Dr. Roberto Flores, PI), University of Illinois at Chicago (Dr. Janine Rosenberg, PI), and the University of North Carolina– Chapel Hill (Dr. Margot Stein, PI). We also greatly appreciate children’s and caregivers’ willingness to participate. The authors declare no potential conflicts of interest with respect to the authorship and/or publication of this article.
Publisher Copyright:
© 2017, © International & American Associations for Dental Research 2017.
PY - 2017/12/1
Y1 - 2017/12/1
N2 - Quality of life is a valid patient-reported parameter that provides an assessment of treatment need or outcomes complementary to standard clinical measures. Such patient-reported assessments are particularly salient when examining chronic conditions with prolonged treatment trajectories, such as cleft lip and palate. This critical review identifies key questions related to ongoing research on the oral health–related quality of life (OHRQoL) in children with cleft and caregiver well-being. Details of the design and results from 2 longitudinal multicenter studies are presented. This article also provides an update on recent published reports regarding OHRQoL in individuals with cleft. Methodological issues in OHRQoL research are discussed, including condition-specific versus generic instruments, incorporating positive items in OHRQoL instruments, calculating minimally important differences in OHRQoL, implementing mixed methods design, and utilizing validated short assessment forms in OHRQoL research. Finally, new directions for research in cleft as a chronic condition are identified and discussed.
AB - Quality of life is a valid patient-reported parameter that provides an assessment of treatment need or outcomes complementary to standard clinical measures. Such patient-reported assessments are particularly salient when examining chronic conditions with prolonged treatment trajectories, such as cleft lip and palate. This critical review identifies key questions related to ongoing research on the oral health–related quality of life (OHRQoL) in children with cleft and caregiver well-being. Details of the design and results from 2 longitudinal multicenter studies are presented. This article also provides an update on recent published reports regarding OHRQoL in individuals with cleft. Methodological issues in OHRQoL research are discussed, including condition-specific versus generic instruments, incorporating positive items in OHRQoL instruments, calculating minimally important differences in OHRQoL, implementing mixed methods design, and utilizing validated short assessment forms in OHRQoL research. Finally, new directions for research in cleft as a chronic condition are identified and discussed.
KW - cleft lip
KW - cleft palate
KW - family relations
KW - longitudinal studies
KW - patient-reported outcomes
KW - resilience
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U2 - 10.1177/0022034517725707
DO - 10.1177/0022034517725707
M3 - Article
C2 - 28813183
AN - SCOPUS:85034783077
VL - 96
SP - 1474
EP - 1481
JO - Journal of Dental Research
JF - Journal of Dental Research
SN - 0022-0345
IS - 13
ER -