Objective: To describe the association between children's orofacial cleft (OFC) and families' quality of life (QoL), using the short-form Family Impact Scale questionnaire (FIS-SF). Also assessed were the psychometric properties of the FIS-SF, as well as whether certain demographic and clinical variables impacted the family.
Design: Observational cross-sectional study.
Setting: Tertiary care public children's hospital in New South Wales, Australia.
Participants: Parents/caregivers of children with OFC.
Main outcome measure(s): The short-form Family Impact Scale questionnaire.
Results: Two hundred and fourteen parents completed the FIS-SF. Excellent convergent validity was evident, but discriminant validity was weaker. Those children with velopharyngeal insufficiency/submucous cleft reported lower scores on the family/parental activity, and lower overall family impact scores than those with cleft lip (CL) or cleft palate (CP). Those with cleft lip and palate (CL/P) had poorer family/parental activity scores than those with CP. There were no systematic differences in FIS-SF scores by the child's age, gender, private health insurance, living location, the number of cleft-related operations, or whether a child had commenced orthodontic treatment.
Conclusions: The FIS-SF is a valid and reliable measure for determining the impact that OFC has on family QoL. The impact of OFC on children's families differs according to cleft type.
Keywords: family impact scale; oral health-related quality of life; orofacial cleft; quality of life.