DOI: 10.1177/10556656261462270 ISSN: 1055-6656

Quality of Life for Children with Cleft Lip and Palate and Their Families: The Effect of Adoption from China

Kathleen A. Kapp-Simon, Meredith Albert, Canice E. Crerand, Claudia Crilly Bellucci, Celia E. Heppner, Suzanne Woodard, Amy L. Conrad
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Objective

To compare parent-proxy and child self-reported quality of life (QoL) for children with cleft lip and palate (CLP) by adoptive status from China.

Design

Observational multi-site study.

Setting

Six North American cleft treatment clinics.

Participants

Children with CLP ages 8.0-10.99 years and their parents (adopted from China, N = 87; not adopted, N = 167).

Outcome Measures

Pediatric QoL Inventories (PedsQL): Parent, Child, Family Impact Module (FIM); CLEFT-Q.

Results

Multivariate analyses of covariance, adjusted for age, race, and socioeconomic status main effects (adoptive status, sex, and interactions of adoptive status with sex) and results were not significant by adoptive status, sex, or the interactions of adoptive status with sex for CLEFT-Q, Parent PedsQL FIM outcomes, or Parent/Child PedsQL subscale outcomes ( Ps  > .159). Parent-proxy PedsQL School was higher for females regardless of adoptive status (MD = -4.82, CI = -9.53, -.11, P  = .045). Child PedsQL Social QoL was higher for children adopted from China (MD = 8.91, CI = 1.18, 16.64, P  = .024), where females who were adopted reported higher PedsQL social scores than females who were not adopted (MD = 11.83, CI = 3.09, 20.57, P  = .008). Females who were adopted reported higher Cleft-Q Social scores than males who were adopted (MD = -6.95, CI = -18.54, -.54, P  = .038).

Conclusions

Child and Family QoL was comparable between children with CLP, aged 8-10 years, who were and were not adopted. Being adopted may confer some protection for social functioning, particularly for females who are adopted.

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