Subjective and objective aspects on living with a cleft. A study focused on the isolated cleft palate and the total bilateral cleft lip and palate.

Abstract

Aims: To gain a deeper understanding of the social life aspects in individuals treated for isolated cleft palate (iCP) or total bilateral cleft lip and palate (BCLP). Furthermore, to study risks of having other birth defects in relation to the length of the iCP. For the BCLP, dental conditions and treatment results were evaluated. Finally, opinions on the treatment results for BCLP were compared between orthodontists and young adults. Subjects and Methods: First a qualitative interview using Grounded Theory was carried out. Twelve persons with iCP or BCLP participated. The length of the iCP was evaluated on dental cast models and the presence of other birth defects were studied from records for 343 persons. Dental conditions with focus on the anterior maxillary dentition were studied in 35 persons with BCLP. A web-based questionnaire, with intra and extra-oral photos from 12 of these persons, was evaluated by a group of 25 orthodontists and 20 young adults without any type of cleft. Results and conclusions: In the qualitative interview study, seven important categories were revealed. The main category was “hoping to be like others”. This feeling was not only related to extra-oral appearance. One or more other birth defects can be seen in almost every third child with an iCP. Congenital heart disease and intellectual disability were the most common. A total iCP implied a significantly higher risk (1.7 times) for other birth defects compared to a partial iCP. There was a high frequency (40 %) of missing and/or peg-shaped lateral incisors. This was a factor that affected the treatment results in that a symmetrical upper frontal dentition was hard to achieve during orthodontic treatment. A good sagittal occlusal relationship and a positive overjet were achieved for a majority of the young adults with BCLP. The esthetic outcome of treatment results was more negatively rated by the group of young adults compared to the orthodontists. Additionally, individual opinions on each set of photographs were independent, regardless of the category of evaluators, in explaining the rating scores.