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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.

The taste of a preferred food, pizza, was adulterated with quinine sulfate and the effects of taste experience on subsequent measures of palatability were measured. The measures of palatability were salivary responses to the thought and presentation of pizza. Additional measures were latency to start eating, amount eaten, meal duration, rate of eating and preference ratings of the pizza's taste, aroma and appearance. Thirty-six subjects received access to regular and/or adulterated pizza over two experimental sessions. The resulting groups of nine subjects each received either adulterated and adulterated, adulterated and regular, regular and regular, or regular and adulterated pizza over the two sessions. In a third session all subjects received regular pizza. In session two, groups which had received regular pizza in session one showed a reliably greater salivary response on the presentation trial than on the thought trial. Groups which had received adulterated pizza showed minimal differences in salivation between these trials. In session three, groups which had received regular pizza in session one yielded reliably greater salivation on the presentation trial than did groups which had received adulterated pizza in session one. Furthermore, nonshift groups, which had received the same pizza condition over sessions one and two, showed a greater difference between thought and presentation trial responses than did shift groups, which had received different pizza conditions over sessions one and two. An approach-avoidance conflict model of behavior was applied to the salivation data. Preference ratings of the pizza's taste, the amount eaten and the rate of eating data yielded reliably greater responses for groups which received regular pizza than for groups which received adulterated pizza in sessions one and two. Positive and negative contrast effects were also evidenced by these data. The meal duration and latency to start eating data yielded highly similar responses among groups over days. / M.S.

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.

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Thesis (MSocialWork)--Stellenbosch University, 2002. / ENGLISH ABSTRACT: In this study an explorative and a descriptive design has been implemented with the aim of obtaining knowledge, insight, and understanding of the psycho-social implications of a cleft lip and/or cleft palate for the individual child as well as the family. The motivation for this study was a result of the lack of knowledge on the psycho-social adjustments of an individual/child with a cleft lip and/or cleft palate and his/her family. The researcher became conscious of this lack during a full preliminary inquiry and this lack has been confirmed by the Department of Social Work as well as the Department of Maxillo-Facial-and Oral Surgery at Tygerberg Hospital. The aim of this study is therefore to create guidelines concerning social welfare interference in families after the birth of a baby with a cleft lip and/or cleft palate, in order to improve psycho-social functioning. The literature study included occurrence and incidence, embryological development, etiology of cleft lip and/or cleft palate as well as the psycho-social implications for the individual/child and the family. The medical aspects, namely the etiological and embryological development of cleft lip and/or cleft palate only serves as a background for the medical social worker that forms part of the interdisciplinary team of a cleft palate/lip clinic. This research focuses primarily on the psycho-social implications of a cleft lip and/or cleft palate on the individual/child as well on the family. The literature study also included the theoretical perspectives which determine the social worker's task and the system and strength perspective has been focused on. These perspectives have been implemented according to the development-aimed approach. The researcher decided to involve ten pre-school children with congenital deformity, between the ages of one month to six years as well as their mothers, who are from the service area of the Tygerberg Hospital in the research. The study was determined by a combination of qualitative as well as quantitative research methods, namely structured interviews as well as structured questionnaires. The results of this research confirmed the results of the literature study to a great extent, namely that individuals/children with a congenital deformity, as well as their families, are a highrisk group for psycho-social problems. These psycho-social problems indicate relationship problems in the family, cognitive problems for the individual/child as well as social adjustment problems for the individual/child and the family. Therefore the results gave an indication of what the content of intervention programmes for this target group should be. The recommendations focused on three areas, namely general recommendations concerning prenatal clinics where the cleft lip and/or cleft palate should be identified, general recommendations concerning guidelines for the social worker before intervention in the target group starts and recommendations with the aim of creating guidelines for social welfare intervention, in order to limit the psycho-social implications on the individual/child. The recommendations include further research in order to address society's ignorance concerning cleft lip and/or cleft palate. This research should focus on the development of social welfare programmes which, by primary prevention, aim at improved informing the society of this deformity. / AFRIKAANSE OPSOMMING: 'n Verkennende sowel as 'n beskrywende ontwerp is in hierdie studie geïmplementeer ten einde kennis, insig en begrip oor die psigo-sosiale implikasies van 'n gesplete lip en/of verhemelte vir individu/kind sowel as die gesin te verkry. Die motivering vir hierdie studie het na vore gekom weens die leemte rakende kennis oor die psigo-sosiale aanpassings van 'n individu/kind met 'n gesplete lip en/of verhemelte en sy/haar gesin. Die navorser het van hierdie leemte bewus geword tydens 'n volledige voorondersoek en hierdie leemte is deur die Departement Maatskaplike Werk sowel as die Departement Kaak- en Mondchirurgie te Tygerberg Hospitaal bevestig. Die doel van hierdie studie is dus om riglyne daar te stel ten opsigte van maatskaplike intervensie met gesinne ná die geboorte van 'n baba met 'n gesplete lip en/of verhemelte, ten einde psigo-sosiale funksionering te verbeter. Die literatuurstudie het die voorkoms en insidensie, embriologiese ontwikkeling, etiologie van gesplete lip en/of verhemelte sowel as die psigo-sosiale implikasies vir die individu/kind en die gesin ingesluit. Die mediese aspekte, naamlik die etiologiese en embriologiese ontwikkeling van gesplete lip en/of verhemelte dien slegs as agtergrond vir die geneeskundige maatskaplike werker wat deel vorm van die interdissiplinêre span van 'n gesplete verhemelte/lip kliniek. Hierdie navorsing fokus primêr op die psigo-sosiale implikasies van gesplete lip en/of verhemelte op die individu/kind sowel as op die gesin. Die literatuurstudie het ook die teoretiese perspektiewe wat die maatskaplike werker se taak rig, ingesluit en daar is op die sisteem- en sterkteperspektief gefokus. Hierdie perspektiewe is aan die hand van die ontwikkelingsgerigte benadering geïmplementeer. Daar is besluit om tien voorskoolse kinders met kongenitale deformiteit, dus tussen die ouderdomme van een maand tot ses jaar sowel as hul moeders, wat vanuit die Tygerberg Hospitaal se diensarea afkomstig is, by die ondersoek te betrek. Die ondersoek is deur 'n kombinasie van kwalitatiewe sowel as kwantitatiewe navorsingsmetodes, naamlik gestruktureerde onderhoude sowel as gestruktureerde vraelyste, gerig. Die resultate van hierdie ondersoek het tot 'n groot mate die bevindinge van die literatuurstudie bevestig naamlik dat individue/kinders met 'n kongenitale deformiteit, sowel as hul gesinne, 'n hoë risikogroep vir psigo-sosiale probleme is. Hierdie psigo-sosiale probleme dui byvoorbeeld op verhoudings-probleme in die gesin, kognitiewe probleme vir die individu/kind sowel as sosiale aanpassingsprobleme vir die individu/kind en die gesin aan. Die resultate het dus 'n aanduiding gegee van wat die inhoud van intervensieprogramme vir hierdie teikengroep behoort te wees. Die aanbevelings het op drie areas gefokus naamlik algemene aanbevelings ten opsigte van voorgeboorteklinieke waar gesplete lip en/of verhemelte geïdentifiseer moet word, algemene aanbevelings ten opsigte van riglyne vir die maatskaplike werker voordat intervensie met die teikengroep begin en algemene aanbevelings ten einde riglyne daar te stel vir maatskaplike intervensie, sodat die psigo-sosiale implikasies op die individu/kind beperk word. Die aanbevelings sluit in verdere navorsing ten einde die onkunde van die samelewing ten opsigte van gesplete lip en/of verhemelte aan te spreek. Hierdie navorsing moet fokus op die ontwikkeling van maatskaplikewerk-programme wat deur primêre voorkoming die samelewing beter aangaande die deformiteit inlig.