Health-related quality of life in cleft lip and/or palate patients – A cross-sectional study from preschool age until adolescence

Abstract

PurposeCleft lip and/or palate (CLP) is the most common congenital craniofacial anomaly. Multiple operations, long-lasting supplementary treatments, as well as impaired functional and esthetic outcome might have a negative impact on patients’ social–emotional functioning and self-esteem, resulting in a lower health-related quality of life (HRQoL). Patients and methodsThis cross-sectional study aimed to evaluated CLP patients’ HRQoL from preschool age (4 years) until adolescence (18 years) using the age-specific German KINDLR questionnaire. We compared self-reports and parent proxy-reports, as well as reference values from an age-matched German norm population. Multivariate analysis was applied to identify mediating factors, e.g. cleft type, age, and gender. Additionally, a KINDSCREEN-10 questionnaire was used to implement a screening tool in the clinical routine. ResultsIn total, 134 participants (average age 9.0 ± 3.8 years; 47.8% female) were included. Compared with German normative data, the evaluation revealed a significantly higher 'total QoL′ in all self-report groups (Kiddy-, Kid-, Kiddo-KINDLR) and a significantly higher proxy rating for children aged 7–13 years. Multivariate analysis verified a significant disparity between self-reports and parents’ conceptions of HRQoL, as well as a deterioration of the ratings with increasing age. No significant effects of other contributing factors, e.g. cleft type and gender, were found. The KIDSCREEN-10 questionnaire successfully confirmed these findings. ConclusionsSurprisingly, our survey revealed a higher HRQoL in cleft patients compared with normative data from healthy controls. But because the return rate of the forwarded questionnaire was low, this may have contributed to bias. Keeping this in mind, we may conclude at least that the HRQoL in our cleft patients was not significantly lower than in healthy children. On the other hand, it can be assumed that the special attention of the parents and the support from speech therapy and other medical professionals may have contributed to a positive effect on family interaction, communication skills, and self-esteem.