Parental perception of cleft lip in Kuwait.

Background: Cleft Lip (CL) and Cleft Palate (CP) are one of the most common and immediately recognizable craniofacial malformations worldwide, forming the fourth most common congenital anomalies among newborns. Current research evidence suggests that cleft lip/palate CL/CP is caused by a combination of both environmental and genetic risk factors. CL is repaired at 3 months of age in most centers, including the one used for the study, Al-Babtain Centre for Burns and Plastic Surgery, where the infant is of an appropriate size and weight. Cleft palate (CP) is repaired at a later time, often between 9 and 12 months of age. The country of Kuwait was the focus of this research study, where the mean incidence of CL at the time was established to be 1.48 per 1,000 births. The incidence of CL/CP confers significant financial burden and psychological pressure on patients’ families. A survey was conducted to assess levels of public knowledge and awareness regarding CP and CL, its management and associated risk factors. Method: A retrospective cross-sectional survey of CL +/- CP patients (CL(P)) under the age of 8 who have undergone CL surgical repair between the ages of 3 and 6 months during 2010 until 2017, at Al-Babtain Centre for Burns and Plastic Surgery in Kuwait. All participants have received full orthodontic treatment prior to undergoing CL surgical repair. A total of 261 participants were surveyed. The response rate was 38% (100/261). The survey was of an open-ended nature. Results were tabulated according to preconceived questions and later expressed as percentages. Results: More than half of the participants (54/100) have not heard of CL/CP prior to having an affected child. Quarter of parents (25/100) felt it was appropriate to have CL surgically repaired between the ages of 1 and 3 months; more than half of parents (63/100) felt it was best to operate between the ages of 3 and 6 months; and only 12% of parents (12/100) thought it was best to operate between the ages of 6 and 12 month. Almost all patients (91/100) were satisfied with the aesthetic outcome of CL surgery. More than three-quarter of parents (81/100) demonstrated an understanding for the need for feeding support via specialized feeding bottles and correct positioning whilst feeding a child affected with an orofacial cleft. 82% of patients (82/100) were actively engaged in post-operative follow-up. Over half of the participants (54/100) were aware that their children may require subsequent operations to CL repair as part of CL sequelae treatment, whilst 37% of parents (37/100) felt that CL was a heritable condition that could be passed onto offspring. Conclusion: The present survey showcased key knowledge gaps about CL/CP amongst caregivers, limiting the standard of care to CL patients. Such limitation could be addressed by media campaigns aimed at increasing public awareness of orofacial clefts. This could be delivered via conventional routes such as: television; radio; billboards; and leaflets, or through social media, a more contemporary platform with a high adoption rate amongst teenagers in Kuwait. The establishment of specialized antenatal cleft clinics could overcome any uncertainty amongst caregivers, thus raising the general level of orofacial cleft awareness.