Assessment of Orthodontic Burden of Care in Patients With Unilateral Complete Cleft Lip and Palate.

OBJECTIVE: To assess the orthodontic burden of care of patients from a Brazilian rehabilitation center (Hospital for Rehabilitation of Craniofacial Anomalies, University of São Paulo [HRAC-USP]). DESIGN: Retrospective. SETTING: Hospital for Rehabilitation of Craniofacial Anomalies, University of São Paulo. INTERVENTIONS: One hundred files of unilateral complete cleft lip and palate patients who had consecutively finished orthodontic rehabilitation at HRAC-USP were evaluated from January 2011 to January 2013. The duration of orthodontic treatment, number of visits, kilometers traveled, number of appliances and surgical procedures performed were recorded. The sample was divided into 2 subgroups according to severity the interarch relation (Goslon Yardstick score) at the beginning of orthodontic treatment. Mann-Whitney test was applied for intergroup comparison ( P < .05). RESULTS: For the total sample (n = 100), the mean time of orthodontic treatment was 140.2 months, the mean number of orthodontic appointments was 61.8, the mean number of appliances was 10, the mean number of surgical procedures was 6.2, and the mean distance traveled to attend the center for orthodontic appointments was 38,978.5 km. The subgroup with the most severe malocclusion (Goslon yardsticks scores 4 and 5) showed a longer orthodontic treatment length, greater number of surgical procedures, and longer distance traveled than those presenting Goslon yardstick scores 1, 2, and 3. CONCLUSION: Patients with greater severity of the initial malocclusion experienced a higher burden of care than patients with less severity of the initial malocclusion. To reduce the burden of care, research and efforts should focus on minimizing maxillary growth deficiency related to primary surgery.

Avaliação do efeito imediato de exercício de trato vocal semiocluído no mecanismo velofaríngeo em cinco portadores de fissura labiopalatina: estudo piloto / Assessment of the immediate effect of a semi-occluded vocal tract exercise on velopharyngeal mechanism in five patients with cleft lip and palate: pilot study

Introdução: As fissuras labiopalatinas não sindrômicas estão incluídas entre as malformações craniofaciais severas mais frequentes na população humana. O indivíduo acometido pode apresentar alterações no mecanismo velofaríngeo, comprometendo-se assim a inteligibilidade da fala. O objetivo deste estudo foi analisar o efeito imediato do exercício de trato vocal semiocluído no mecanismo velofaríngeo de pacientes com fissura labiopalatina. Métodos: A amostra foi composta por cinco sujeitos com fissura labiopalatina reparada cirurgicamente submetidos a avaliação multidimensional, de videonasofibroscopia, análise das imagens dinâmicas por meio de software especializado e análise de fala por meio da avaliação perceptivoauditiva e parecer autorreferido. Resultados: Todos os pacientes apresentaram melhora na fala encadeada após o exercício, melhora acentuada na impressão geral da emissão e projeção vocal, maior fechamento velofaríngeo e efeito positivo na autoavaliação. Conclusão: Observou-se efeito positivo do exercício de trato vocal semiocluído quando aplicado nessa amostra.

Development of a Valid and Reliable Instrument for the Assessment of Quality of Life in Adolescents with Clefts - Detection of Potential Mental Health Issues.

BACKGROUND: The rehabilitation of patients with cleft deformities is very complex and unique, and managed by a team of professionals. Quality of life depends on the health, and represents an instrument that examines the disease impact and treatment modalities on the health, integrating an objective assessment of the health status and its subjective experience. Children with clefts are often teased by their peers, and that is the reason why they experience different kinds of psychological distress. Patients with non-syndromic clefts may develop depression and anxiety, hyperactivity, elevated risk of suicide and increased drug abuse in adolescence. SUBJECTS AND METHODS: Experienced members of a cleft palate team developed a specific questionnaire divided into 2 parts: the first contains the clinical profile of adolescents, and the second part contains questions regarding quality of life. This questionnaire was administered to 73 patients between June 2015 and June 2016, who matched these criteria during their control examinations at the University Hospital Dubrava. RESULTS: In general, the patient group showed significantly worse scores on majority of answers, specifying that their quality of life is worse compared to the control group. The principal component analysis revealed the presence of three components (factors). The interpretation of the three components was consistent with loadings indicating the component names: Component 1: The relationship with parents, success, society; Component 2: Appearance, and Component 3: Function. CONCLUSION: According to our results, we created a specific instrument - The Quality of Life in Adolescents with Cleft Assessment to assess aesthetic and functional results of treatment and quality of life of the operated adolescents with clefts. The adolescents in this study have no psychiatric disorders diagnosed in their medical charts, but results indicate that some of them need help in dealing with future life. Regarding these findings, it will be possible to intervene in the process of treatment and improve the overall outcome of therapy.

Orofacial clefts in Brazil and surgical rehabilitation under the Brazilian National Health System

The objective of this study was to investigate the prevalence of live births with orofacial clefts in Brazil from 2009 to 2013, according to Brazil's federative units and regions, and correlate it with the number of corrective surgery procedures for cleft lip and palate performed through the Brazilian National Health System in the same period. The data were collected from the National Live Birth System (SINASC in Portuguese) and the Hospital Information System (SIH-SUS in Portuguese). The results showed that the average prevalence of oral clefts in the period was 5.86 per 10,000 live births, with differences observed between the federative units and the regions. The correlation between the prevalence of orofacial clefts and the number of medical procedures associated with this anomaly was statistically significant (r=0.94; p <0.001). This result indicates that greater investments are being made in areas with a higher number of cases. The relationship between supply and demand for corrective surgeries suggests that only 18.91% of the live births with orofacial clefts in this period may have received this service under the Brazilian National Health System.

Orofacial clefts in Brazil and surgical rehabilitation under the Brazilian National Health System

Abstract The objective of this study was to investigate the prevalence of live births with orofacial clefts in Brazil from 2009 to 2013, according to Brazil’s federative units and regions, and correlate it with the number of corrective surgery procedures for cleft lip and palate performed through the Brazilian National Health System in the same period. The data were collected from the National Live Birth System (SINASC in Portuguese) and the Hospital Information System (SIH-SUS in Portuguese). The results showed that the average prevalence of oral clefts in the period was 5.86 per 10,000 live births, with differences observed between the federative units and the regions. The correlation between the prevalence of orofacial clefts and the number of medical procedures associated with this anomaly was statistically significant (r=0.94; p <0.001). This result indicates that greater investments are being made in areas with a higher number of cases. The relationship between supply and demand for corrective surgeries suggests that only 18.91% of the live births with orofacial clefts in this period may have received this service under the Brazilian National Health System.

Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 5: institutional outcomes assessment and the role of the Laboratory of Physiology.

The Laboratory of Physiology provides support for the diagnosis of functional disorders associated with cleft lip and palate and also conducts studies to assess, objectively, the institutional outcomes, as recommended by the World Health Organization. The Laboratory is conceptually divided into three units, namely the Unit for Upper Airway Studies, Unit for Stomatognathic System Studies and the Unit for Sleep Studies, which aims at analyzing the impact of different surgical and dental procedures on the upper airways, stomatognathic system and the quality of sleep of individuals with cleft lip and palate. This paper describes the main goals of the Laboratory in the assessment of procedures which constitute the basis of the rehabilitation of cleft lip and palate, i.e., Plastic Surgery, Orthodontics and Maxillofacial Surgery and Speech Pathology.

Rehabilitative treatment of cleft lip and palate: experience of the Hospital for Rehabilitation of Craniofacial Anomalies/USP (HRAC/USP) - Part 5: Institutional outcomes assessment and the role of the Laboratory of Physiology

The Laboratory of Physiology provides support for the diagnosis of functional disorders associated with cleft lip and palate and also conducts studies to assess, objectively, the institutional outcomes, as recommended by the World Health Organization. The Laboratory is conceptually divided into three units, namely the Unit for Upper Airway Studies, Unit for Stomatognathic System Studies and the Unit for Sleep Studies, which aims at analyzing the impact of different surgical and dental procedures on the upper airways, stomatognathic system and the quality of sleep of individuals with cleft lip and palate. This paper describes the main goals of the Laboratory in the assessment of procedures which constitute the basis of the rehabilitation of cleft lip and palate, i.e., Plastic Surgery, Orthodontics and Maxillofacial Surgery and Speech Pathology.

[Change and innovation in orthodontics]. / Wandel und Innovation in der Kieferorthopädie.

Long-term prophylaxis achievements, demographic changes, scientific progress, patient requirements, and political regulations through social legislation will fundamentally change the future of orthodontics, i.e., a reduction in children and adolescent therapy as well as an increase in interdisciplinary complex treatments for adult patients mostly outside the social security system. Health care research at a high evidence level needs to be intensified due to social-political reasons. In addition to well-proven appliances, modern sometimes even invisible appliances (CAD-CAM) will be used in future orthodontic therapy. Three-dimensional diagnostics could improve treatment planning. Whether improved prenatal diagnosis will alter the number of newborns with dentofacial malformations (cleft lip and palate) or syndromes (e.g., Down syndrome), thus, changing treatment needs in the future, cannot be predicted today, due to the multiple influencing factors. A well-structured 4-year specialist training according to European guidelines will also be necessary in the future to comply with complex treatment needs be it within or outside the social security system (quality assurance).

Extending multidisciplinary management of cleft palate to the developing world.

The needs of patients with a cleft lip and/or palate (CL/P) extend beyond surgical repair. A multidisciplinary approach to the care of patients with CL/P is the widely accepted standard in most regions of the developed world. Patients with CL/P in developing countries have needs similar to those of patients in industrialized nations. However, the existing shortages of healthcare resources have precluded provision of the most basic care to those with a CL/P. Innovative applications of technology can facilitate the delivery of speech therapy, evaluation of audiometric data, and limited dental evaluation for these patients with a modest financial investment. One method by which this care might be provided is with the use of Internet-based modalities. This represents a near universally available method to fill a conspicuous gap in the preoperative evaluation and postoperative care of patients with CL/P in the developing world. With rapidly expanding access to the Internet, particularly with wireless-3G connectivity worldwide, it is time to expand our delivery of humanitarian care beyond surgery alone in treating patients with CL/P in medically underserved areas.

Social life aspects of young adults with cleft lip and palate: grounded theory approach.

OBJECTIVES: The findings of many questionnaire and inventory studies suggest that people with cleft lip and/or palate report a decreased quality of life. Common problems include dissatisfaction with the external appearance of the lips and nose, speech problems, depression, and anxiety. This qualitative study aimed to explore the subjective perceptions and values of young adults with clefts, particularly with regard to their social lives. MATERIAL AND METHODS: Twelve persons participated in an in-depth interview. Among those, seven had a repaired isolated cleft palate involving only the hard/soft palate. Five had a repaired bilateral cleft lip and palate that had been a continuous lesion of the lip, the alveolar process, and the palate. A grounded theory approach was used to conduct and analyze the interviews. RESULTS: The study revealed seven important categories--hoping to be like other people, being treated differently from others, experiencing deviation from others, regarding oneself as being different from others, lack of recognition, low self-esteem, and receiving recognition from significant others--with hoping to be like other people as the core category. CONCLUSION: Young adults with either cleft lip and palate or isolated cleft palate who received recognition from significant others reported increased self-esteem and greater ability to cope with their social lives.

Keys to a successful cleft lip and palate team.

The severity and complexity of the defects in patients with cleft lip and/or palate (CLP) require a complex and long-term programme of care, aiming primarily at the best aesthetic and functional outcome, with a minimum of procedures and optimal cost-effectiveness. This delivery of comprehensive and coordinated health care to patients with CLP is optimally provided through collaboration in a specialised CLP team. There is international consensus about the fundamental elements of CLP treatment: multidisciplinary teamwork, centralisation, high-volume care, team continuity, long-term treatment planning from birth to adulthood, standardised protocols, documentation, evaluation, follow-up studies, research, training and quality assurance.

[Social orientation of parents of children with cleft lip and palate]. / Soziale Orientierung der Eltern von Kindern mit Lippen-Kiefer-Gaumen-Spalten.

BACKGROUND: Cleft lip and palate are the most common malformation in the orofacial region. The type and dimension of the cleft determine the functional limitations of respiration, swallowing, speech, articulation and hearing. In addition, cosmetic and communicative restrictions influence the cognitive, social and educational progress and the wellbeing of the children affected. Their parents face a difficult and lasting task: They have to cope with their child's handicap and the current standardised treatment procedures which start in early infancy. To guarantee optimum therapeutic success parents must be included as co-therapists. Therefore more information about parents' concerns and coping strategies are required. METHOD: To assess the strain put on parents of children with cleft lip and palate as well as the parents' coping strategies, a standardised questionnaire for the German-speaking parents was used during consultation in the out-patient clinic. RESULTS. In comparison with parents of children with other handicaps, the parents of children with cleft lip and palate feel less stressed out and adopt strategies of coping such as intensification of partnership, use of social support, as well as self-respect and fulfillment. Working mothers are less preoccupied and less at risk of being focussed on the handicapped child only. In comparison, the parents of children with Orofacial clefts focus less on the handicapped child in general than those parents whose children suffer from additional behavioural disorders. DISCUSSION: Though several functional, behavioural and psychological disorders may occur in children with cleft lip and palate their parents feel comparatively little stress. They do use a variety of coping strategies and tend to adopt a rather positive approach. Certainly, additional disorders of the child lead to more parental stress and likewise requiring more attention to the child which may even accentuate existing behavioural disorders. CONCLUSION: Parents of children with cleft lip and palate experience less stress in comparison with parents of children with other handicaps. Therapeutic efforts and regular check of the child's progress might support parents' coping strategies. Therapists should also ask for additional disorders such as behavioural disorders and initiate adequate support.

[Quantitative diagnosis of hypernasality in cleft lip and palate patients by computerized nasal quality assessment]. / Quantitative Hypernasalitätsdiagnostik bei LKG-Patienten durch computerisierte Nasalanzmessung.

In patients with cleft lip and palate (CLP), the assessment of velopharyngeal morphology and function and the quantitative analysis of perceptual consequences of velopharyngeal insufficiency are of major importance regarding the effective planning of velopharyngoplasties for speech improvement. The NasalView, a new instrument for the objective assessment of rhinophonia, is presented. The NasalView measures nasalance, the relative sound pressure level of the nasal signal in speech, expressed as a percentage. In order to evaluate the effectiveness of the computerised measurement of nasalance, 156 patients with surgically treated CLP were examined. The NasalView differentiated with high sensitivity and specificity between patients with normal nasal resonance and patients with varying degrees of hypernasality. To illustrate the importance of the NasalView for making the decision for a velopharyngoplasty, a single case is presented.

Functional results with the team care of cleft lip and palate patients in Bergen, Norway. The Bergen Cleft Palate-Craniofacial Team, Norway.

There is international consensus about some fundamental elements concerning treatment of cleft lip and palate (CLP): (1) multidisciplinary teamwork, (2) centralization, (3) team continuity, (4) long-term treatment planning (from birth to adulthood), (5) documentation, (6) evaluation, (7) follow-up studies, (8) research and (9) quality assurance. Every year 120-140 children are born with CLP in Norway (2 per 1,000 live births). For more than four decades the treatment of CLP has been centralized to the University Clinics in Oslo and Bergen. The cost of treatment as well as the travel expenditures for patients born with facial clefts are paid by the Norwegian government (social security). In a speech study of 180 6-year-old children with CLP/CP first operated in Bergen during 1973-1981, normal resonance was found in 76.7% of the children, moderate hypernasality in 11.7%, while 11.6% had marked hypernasality.

Assistência primária em saúde: atuaçäo do enfermeiro frente as necessidades do portador de malformaçäo congênita de lábio e/ou palato / Nursing care of the cleft lip or palate

Neste relato, destacamos a experiência e a evoluçäo da assistência de enfermagem no serviço ambulatorial do Hospital de Pesquisa e Reabilitaçäo de Lesöes Lábio Palatais da Universidade de Säo Paulo, em Bauru-SP, que visa obter os resultados mais adequados possíveis a níveis estético, funcional e psico-social na reabilitaçäo do portador de fissura de lábio e/ou palato. Ressaltamos também a importância da participaçäo ativa do cliente e família no conhecimento de seus problemas de saúde para uma completa reabilitaçäo.

Speech assessment of adolescents.

The adolescent patient provides a unique opportunity for the clinician to be both retrospective and prospective. While adolescence is a period of selective and rapid oral facial growth and dental arch development, the period of rapid speech development is long past. The adolescent patient is entering a period of quiescence and is refining and adjusting existing speech skills. During the patient's adolescence, we have the opportunity to evaluate the outcome of earlier treatment and assess the results of our management strategies and techniques. We also have the opportunity to prospectively modify and improve our treatment strategies. This is a brief review of the experiences of one cleft palate center. Treatment goals and outcomes will be reviewed and areas that require continued refinement will be described.

Alternative technique of constructing bilateral cleft palate in late childhood: a case report and literature review.

Although great advances in treatment of oro-facial clefts have been made over the past 50 years; in developing countries, due to social stigmas and unavailability of specialised medical facilities and personnel to the majority of the population, there is an increasing incidence of patients coming late for repair of oro-facial clefts. This presents a challenge to both plastic, oral surgeons and associated specialists. The aim of the present article is to demonstrate, in the form of a case report, an alternative surgical technique that has be successful in 8 cases for the late repair of severe bilateral cleft palate utilizing locally available and affordable materials. The objective of managing patients with cleft palate in developing countries is to provide the best repair and rehabilitation with as few operations and in-patient care as possible due to limited financial resources experienced by the majority of in-patients. A multidisciplinary approach to the management of oro-facial clefts is emphasised.