Abstract
Background. To date, there seems to be no consensus on the long-term quality of life outcomes in patients living with a cleft of the lip and/or palate (CL/P) with regard to well-being and functioning. Some studies report a substantial influence of having a cleft while other studies report no influence of living with a cleft. The purpose of this study was to investigate the impact of living with a CL/P on esthetics, employment and functioning in Dutch-speaking adolescents and adults with a CL/P. Methods. 30 Patients with a CL/P (19 men and 11 women) were included in the study. The mean age of the participants was 26.93 years (SD = 11.688 years, range = 15 – 66 years). An age and gender matched control group was included consisting of 30 participants (19 men and 11 women) without a CL/P with a mean age of 26.87 years (SD = 11.729 years, range = 16-67 years). Esthetics, employment and functioning were assessed using different standardized self-report questionnaires. Results. No statistically significant difference in educational level, employment, monthly net income, marital status and having children was found between participants with and without a CL/P. In addition, the quality of life scores did not differ between the two groups. Within the group of individuals with a CL/P, the findings revealed that the proportion of participants who reported an influence of the CL/P on daily functioning, general well-being, social contacts, family life, applying for a job, work, education and leisure time differed by age. Older individuals experienced more influence of their CL/P compared to younger individuals. With regard to esthetics, the findings revealed that participants without a CL/P were less satisfied with the appearance of their jaws compared to participants with a CL/P. Conclusion. In general, the findings of our study revealed no significant differences between adolescents and adults with and without a CL/P with regard to employment and functioning. Considering age within the group of participants with a CL/P, however, the results demonstrated that older individuals were more likely to experience a negative impact of their cleft on well-being and functioning. These findings suggest that older individuals with a CL/P might benefit from additional socio-emotional support, for example peer contacts and support groups or psychological guidance. Longitudinal research on this topic is highly needed to determine possible fluctuations in the impact of living with a CL/P.