Objective: To examine quality of life in internationally adopted children with cleft lip and/or palate (CL/P) versus non-adopted children with CL/P.
Design: Cross sectional study.
Setting: Multidisciplinary cleft team of a secondary and tertiary hospital in the Netherlands.
Methods: Parents of children under the age of 8 treated by the multidisciplinary cleft team of our institutions were asked to fill out a questionnaire containing demographic and clinical data and a validated parent proxy measure of cleft-specific quality of life instrument for children aged 0-8: the CleftChild-8. Adopted children were matched to non-adopted children using propensity score matching based on sex, age, type of cleft, if palatal surgery was completed and the level of education of the parent. CleftChild-8 scores were then compared between the matched samples of adopted and non-adopted children with CL/P.
Main outcome measure(s): Differences in (sub)domain scores of the CleftChild-8.
Results: Most median CleftChild-8 scores of the adopted children (n = 29) were slightly lower compared to the 29 matched non-adopted children. A significant difference was seen for the domain score 'satisfaction with (operative) treatment' and 3 of the 13 subdomain scores: 'post-operative results', 'acceptance by siblings' and 'acceptance by family/friends'.
Conclusions: By parent report, adopted children with CL/P experienced some areas of lower quality of life when compared to non-adopted children. Members of cleft teams should be aware of the problems associated with adoption and offer additional guidance and counseling to adopted children and their parents.
Keywords: adoption; cleft lip; cleft palate; quality of life.