Indiana University-Purdue University Indianapolis (IUPUI) / This investigation examined the relationship of the self-concept of children with cleft lip and palate to the self-concept of non-cleft children. Fifty cleft lip and palate children between the ages of eight and 18 were individually matched by age, sex and race with 50 non-cleft children. Each child was given the Piers-Harris Children's Self-Concept Scale. Children with clefts, regardless of sex, reported significantly lower global self-concept than non-cleft subjects (p < .005). Further significant differences between cleft and non-cleft subjects were found in five of six cluster scores. These included: behavior (p < .05), school status (p < .05), popularity (p < .05), happiness and satisfaction (p < .001), and physical attributes and appearance (p < .001). A significant effect (p < .01), was found on the popularity score, with cleft males feeling less popular than their non-cleft peers. A significant effect was also found on the anxiety score, with cleft females reporting significantly more anxiety (p < .01) than their non-cleft peers. A questionnaire was completed by the parents of the cleft and non-cleft subjects evaluating their child's relationship with family, peers and progress in school. In general, parents of both groups reported positive ratings of their child's social interactions. Parents of cleft. . subjects reported more negative responses than the parents of non-cleft subjects concerning the teasing the child experiences because of his/her facial appearance (p < .05) and the effect that the child's facial appearance had on progress in school (p < .05).

Indiana University-Purdue University Indianapolis (IUPUI) / The question of growth attenuation of the maxillary complex arises in connection with primary osteoplasty procedure. The deficiencies associated with the development of the jaws in unilateral complete cleft lip and palate (UCLP) children is an ongoing problem in terms of growth inhibition and orthodontic treatment. Retardation of growth can be attributed to intrinsic cleft factors and/or associated with the treatment of the cleft condition. In this study, the extent of such deficiency, if any, was investigated by assessing arch length, arch width, arch symmetry and inter-arch harmony. Seventeen orthodontic casts of UCLP children (mean age 7 years 11 months) were obtained. All were treated with a primary osteoplasty at James Whitcomb Riley Hospital for Children at Indianapolis, Indiana. The sample was compared to an age and sex matched non-cleft control group (n=38). None of the subjects had undergone orthodontic treatment beyond infant maxillary orthopedics. Anatomic landmarks were identified and digitized by means of optical electronics. The data were automatically fed into a computer which executed preprogrammed data manipulation algorithms. Significant (p<0.05) inhibition of growth has taken place in the maxillary arches of the UCLP group in both anteroposterior and transverse directions. lntercanine width (ICW) was reduced on average by 7.6 mm (23.6 percent) while the intermolar width (IMW) was shortened by 3.9 mm (7.8 percent). Sagittal growth was retarded by 5.5 mm (17.4 percent). A gradient of "normalization" originating at a point of surgical insult was observed anteroposteriorly in the transverse maxillary dimension. In the mandible, ICW was retarded by 2.0 mm (7.8 percent) while IMW and A-P growth vectors were not significantly affected. This investigation also revealed significant (p = 0.0001) differences in the size of the maxillary anterior palatal area (cleft mean = 83.5 mm2, non-cleft mean = 133.9 mm2). These findings lead to the conclusion that primary osteoplasty may contribute to maxillary growth attenuation with concomitant mandibular compensatory growth patterns.

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Background: The management of cleft lip and/or palate (CL/P) includes multidisciplinary care beginning in infancy and continuing through to adulthood. Outcomes of cleft care have been difficult to measure because of the subjective nature of evaluating concepts such as appearance and speech. Including the patient perspective in outcome evaluation through the use of a patient-reported outcome (PRO) measure would provide a more accurate reflection of a patient’s status. The overall objective of this thesis is to show that through adherence to rigorous methods of development, a PRO measure can provide clinically meaningful outcome evaluation in cleft care. Methods: The first paper uses the qualitative method of interpretive description to define a conceptual framework to guide the development of a PRO measure for patients with CL/P, the CLEFT-Q. The second paper describes the protocol for the entire development of the CLEFT-Q. The third paper analyzes the results of the cross-sectional field-test of the CLEFT-Q scales to determine whether or not the CLEFT-Q is able to detect differences between specific cleft types. Results: The qualitative study included 138 patients with CL/P from six countries. The final conceptual framework contained thirteen concepts within the domains of appearance, facial function, and health-related quality of life. The second paper details the process of designing the CLEFT-Q scales. The field-test included 2,434 patients from thirty sites in twelve countries, and CLEFT-Q scores were found to vary with cleft type for all scales. Conclusions: PRO measures need to be rigorously designed in order to provide scientifically sound, clinically meaningful measurement. The CLEFT-Q is able to detect differences between patients with various cleft types, and will be a useful tool to provide the patient perspective in future outcome evaluation in cleft care. / Thesis / Doctor of Philosophy (PhD) / Measuring outcomes of treatment for cleft lip and/or palate (CL/P) should include the patient perspective. The objective of this thesis is to show that through rigorous methods of development, a patient-reported outcome (PRO) measure, the CLEFT-Q, can provide clinically meaningful evaluation of outcomes. First, 136 patients with CL/P from six countries were interviewed to learn what concepts related to having a cleft or its treatment are important to them. A conceptual framework was developed that informed the CLEFT-Q scales. Describing the methodology behind developing the CLEFT-Q then served to inform and engage members of the community. A field-test of the CLEFT-Q scales showed that in a sample of 2,434 patients with CL/P from twelve countries, CLEFT-Q outcomes varied in patients with different types of CL/P. The CLEFT-Q can be used to provide rigorous measurement of PROs in patients with CL/P in the future.

Surgical closure of cleft palate improves function and esthetics but affects facial growth. The effect depends on age of the patient at the time for surgery. The study aimed to compare early versus late closure of the hard palate and its effect on dental arch relationship at the age of five for patients born with unilateral cleft lip and palate (UCLP). The study included 40 non-syndromic, Caucasian children with UCLP. All patients had their surgeries performed by the regional cleft-team at University Hospital of Umeå, Sweden, according to the protocol for treatment of UCLP. The patients were divided into early closure (operation age: approximately 2 years, n = 20) and late closure (operation age 4 - 8 years, n = 20). Dental arch relationships were analyzed on dental casts (n = 36) or clinical photos (n = 4) taken at the age of five using the modified Huddart and Bodenham (mHB) scoring system. The results showed that there was significant difference (P = 0.035) in mHB total score between early closure (median - 6.69) and late closure (median - 3.63). Children who had an early closure of the hard palate had a statistically significant lower mHB total score, and hence worse dental arch relationship compared to children with a late closure.

Background. The treatment of patients born with cleft lip and palate has been gradually modified over the years as the surgical procedures have developed and improved. Multidisciplinary team care has evolved and provided improved care with enhanced results. Clefts in the alveolus can be reconstructed by alveolar bone grafting or by periosteoplasty. The main goal is to repair and close the alveolar cleft and create a continuous alveolar processes so that the teeth can erupt. Aims. This thesis has several aims: to investigate the impact of dental status and initial cleft width on the outcome of Secondary alveolar bone grafting (SABG) in patients born with unilateral cleft lip and palate (UCLP) at the 10-year follow-up (Studies I and II); to compare the outcomes of primary periosteoplasty (PPP) with those of SABG in patients born with unilateral cleft lip and alveolus (CLA) (Study III); to evaluate clinical and radiographic conditions and identify factors important for the final treatment outcomes after SABG ( Study IV); to evaluate two radiographic methods, i.e. occlusal radiographs and cone beam tomography (CBCT)) for assessing alveolar bone height ( study IV). Results. In UCLP patients, SABG achieved excellent results in terms of bone height; tended to reduce with time, correlated with dental status and dental restoration factors. Occlusal radiographs correspond well with the CBCT, for evaluating alveolar bone height in cleft area. The width of the initial cleft does not seem to affect the success of SABG. Finally, patients with CLA treated with PPP at the time of lip repair have inferior bone formation outcomes in the cleft area compared with patients treated with SABG at the time of mixed dentition. Conclusion.  Poor dental status and malpositioning negatively affect the long-term survival of bone in the alveolar cleft. The initial cleft width affects certain dental status factors. In adults with UCLP, the alveolar bone height in the cleft was correlated to the presence of gingival inflammation and restorations at 20 years follow-up. Specially designed maintenance therapy is beneficial, after complex dental restorations in the cleft area. SABG is preferred to PPP for the reconstruction of alveolar clefts.

Les fentes labiales et palatines (FLP) sont les malformations faciales humaines les plus fréquentes. Selon l'origine ethnique et/ou géographique des populations étudiées, elles peuvent concerner jusqu'à 1 /500 naissances. La venue au monde d'un enfant porteur de FLP est un événement particulièrement stressant et traumatisant pour les parents. Une écoute attentive des familles dont l'un des enfants est porteur de FLP révèle l'importance du contexte psychologique et les risques d'une structuration disharmonieuse des relations parents-enfant avec leurs conséquences sur le développement de l'enfant. Dans une démarche éthique de bienfaisance, il est donc primordial de prendre en compte ces risques et de mieux connaitre le vécu des parents par rapport à cette malformation et de ses conséquences sur le développement de l'enfant. Quatre études cliniques multidisciplinaires et multicentriques dont un Projet Hospitalier de Recherche Clinique (PHRC) national, ont été ainsi élaborées et réalisées avec cet objectif. Les résultats montrent qu'il est urgent d'améliorer la qualité de cette information et de l'accompagnement des parents, et cela, dès l'annonce. Il s'agit de soutenir ces parents pour " investir " cet enfant si "différent" de celui attendu et espéré. L'organisation de cette prise en charge doit être renforcée entre les équipes médicales intervenant avant et après la naissance afin d'améliorer la prise en compte thérapeutique et sociétale de ces enfants et de leurs parents. / Cleft lip and patate (CLP) are the most common facial malformations in humans. Depending on the ethnie and/or geographical origin of the populations studied, they can affect up ta 1 /500 of newborn infants.Careful consideration of families concerned shows the importance of the psychological context, and the repercussions of a disharmonious structuring of the parent-child relationship on the child's development.The prospective, multidisciplinary and multi-centre studies described here aimed to assess the psychological perceptions of parents of children affected by CUP over the year following the birth,and to analyse the degree of psychological suffering experienced by the child, and the parent-child relationship. The results show that it is urgent to improve the quality of the information given to the parents, and their accompaniment and support, as soon as the malformation is disclosed. Parents need support to become "committed" to their child, so "different" from their hopes and expectations. The organisation of this support needs to be reinforced between medical teams before the birth and after, so as to improve the way the condition is catered for, from both the therapeutic and the social viewpoint. We believe the results of this research will enable us ta develop new methods to lessen the psychological impact of the malformation on the parents, and improve treatment for the children in the long term.

Doctor Educationis / This study was a cephalometric and dental investigation of the treatment outcomes of UCLP children treated at the Red Cross Children's Hospital (RCCH) with respect to craniofacial morphology and dental arch relationship. The quality of the outcome for the RCCH group was compared with the outcomes reported for the Six-Centre International Study (Melsted et al., 1992; Mars et al., 1992). The sample consisted of 20 (11 females, 9 males) consecutively treated UCLP children who had cephalometric and dental records taken between the ages of8 to 11years (mean 10.13 ± 1.2 years). The cephalometric analysis described by Melsted et al. (1992) was used to evaluate the skeletal and soft tissue morphology. The quality of the dental arch relationship was measured according to the Gosion Yardstick (Mars et al., 1987). The treatment outcome of children treated at the RCCH was evaluated with respect to craniofacial form and dental arch relationship. When comparing the mean cephalometric skeletal parameters of the RCCH to the six centres in the Eurocleft study, a significant difference was found between the RCCH group and centre D for most of the variables. A significant increase in the upper incisor inclination and maxillary inclination was found in the RCCH patients compared to the European centres. The difference in the soft tissue parameters was limited to the relative protrusion of the nose and the sagittal soft tissue variable sss-ns-pgs. The analysis of the Goslon scores showed a significant difference between the RCCH group and centres C, D, and F. According to the Goslon score, 85% of the RCCH patients had good to satisfactory dental arch relationship, which was comparable to that recorded for centres A(92%), B(89%) and C(94). In conclusion, the results of the cephalometric analysis and the Goslon Yardstick showed a significant difference between the RCCH group and centre D. The GosIon score indicated good quality of the dental arch relationship, which faired favourably with the better centres in the Six Centre Study.

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