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.
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 -