Comparative analysis of healthcare provision to individuals with cleft lip and/or palate at specialised academic centres in South Africa.

BACKGROUND: Cleft lip and/or palate (CLP) is the most common congenital anomaly of the craniofacial complex, with an estimated worldwide prevalence of 1/500 - 700 live births. Affected children require immediate medical treatment and prolonged management by a multidisciplinary team of health professionals. OBJECTIVES: To describe and compare healthcare provision to individuals with CLP at specialised care centres in South Africa (SA). METHODS: The study was conducted at all CLP care centres in 6 of SA's 9 provinces that provide specialised treatment and care to individuals with CLP. At each centre, the team leader was interviewed using a semi-structured questionnaire that focused on the point-of-care entry for CLP patients; type of services provided; whether treatment protocols were used, which treatment protocols were used and internal referral systems; and members of the healthcare team. Stata 13 (StataCorp., USA) was used to analyse the data. RESULTS: Eleven CLP team leaders participated in the study, of whom 5 were from Gauteng Province. The point-of-care for CLP patients in the majority of centres was plastic surgery (n=9/11; 81.8%). The majority of centres (n=10/11; 90.9%) followed similar treatment protocols and only 1 centre performed lip surgery at 12 - 18 months. Although all centres reported a multidisciplinary team approach for CLP care provision, there were gaps in the health professions categories, which influenced the type of treatment provided. Hence, surgical repair of the lip and palate (n=10/11; 90.9%) and speech therapy (n=7/11; 63.6%) dominated the type of treatment provided, and patients were referred to other provinces or to the private health sector for other types of treatment. CONCLUSIONS: The gaps in services at the CLP care centres in SA need to be addressed to ensure integrated, holistic care provision.

Perfil epidemiológico da criança e do adolescente com fissura oral atendidos em um centro de referência em Curitiba, PR, Brasil / Epidemiological profile of children and adolescents with oral cleft treated at a referral center in Curitiba, PR, Brazil

INTRODUÇÃO: A fissura oral é a segunda maior causa de anomalias congênitas e representa a principal alteração craniofacial em nascidos vivos. O objetivo do presente estudo foi determinar os dados epidemiológicos do Centro de Atenção Integral ao Fissurado Labiopalatal, no período entre janeiro de 2011 e dezembro de 2014. MÉTODOS: Estudo retrospectivo utilizando prontuários clínicos. Foram avaliados 1262 prontuários de pacientes portadores de fissura oral. Após aplicação dos critérios de inclusão e exclusão, 52,7% prontuários foram incluídos no estudo. RESULTADOS: Entre os 666 prontuários, 57,4% foram do gênero masculino e 42,6% do feminino. Verificou-se que 34,8% dos pacientes apresentaram fissuras transforame, 27,2% fissuras pré-forame, 25,8% fissuras pós-forame e 12,2% outros tipos de fissuras. Pacientes oriundos de Curitiba e Região Metropolitana correspondem a 36,6%, aqueles do Interior do Paraná abrangem 61% dos atendimentos no Centro de Atenção. As medianas de idade na primeira consulta, entre os pacientes de Curitiba e Região Metropolitana e do Interior do Paraná, são de 1 mês e 2 meses, respectivamente. E a primeira cirurgia, realizada no Centro de Atenção, foi em torno de 6 meses, nos pacientes de Curitiba e Região Metropolitana, e de 7 meses naqueles oriundos do Interior do Paraná. CONCLUSÃO: Verificou-se predomínio de fissuras em meninos e maior frequência da fissura pós-forame incompleta. Observou-se que, apesar da distância, as crianças oriundas do Interior do Paraná realizaram a cirurgia de correção e chegaram ao centro de referência com apenas um mês de diferença em relação aquelas da cidade sede do Centro de Atenção Integral ao Fissurado Labiopalatal.

INTRODUCTION: Oral cleft is the second major cause of congenital anomalies and represents a major craniofacial alteration in live births. The objective of this study was to analyze the epidemiological data collected from the Center for Comprehensive Care to Individuals with Cleft Lip and Palate in the period from January 2011 to December 2014. METHODS: This retrospective study evaluated 1,262 medical records of patients with an oral cleft. After applying the inclusion and exclusion criteria, 52.7% of the medical records were included in the study. RESULTS: Among the 666 medical records, 57.4% were of male patients and 42.6% were of female patients. Of these, 34.8% of the patients had a trans-foramen cleft, 27.2% had a pre-foramen cleft, 25.8% had a post-foramen cleft, and 12.2% had another type of cleft. Patients from Curitiba and the metropolitan region constituted 36.6% of the cases, and patients from rural areas of Paraná represented 61% of the visits to the care center. The median age at the first visit of the patients from Curitiba/metropolitan region and rural areas of Paraná was 1 and 2 months, respectively. The first surgery was performed at the care center at the age of 6 months in patients from Curitiba and metropolitan region and 7 months in patients from rural areas of Paraná. CONCLUSION: There was a predominance of boys and a higher prevalence of incomplete post-foramen clefts in the total population. Despite the long distance to the care center, children from rural areas of Paraná underwent the correction surgery and were treated at the referral center with an age difference of only 1 month compared with patients who lived in Curitiba, where the care center is located.

Evidence-Triggers for Care of Patients with Cleft Lip and Palate in Srinagarind Hospital: The Tawanchai Center and Out-Patients Surgical Room.

Background: Cleft lip and palate (CLP) is a congenital anomaly of the lip and palate that is caused by several factors. It was found in approximately one per 500 to 550 live births depending on nationality and socioeconomic status. The Tawanchai Center and out-patients surgical room of Srinagarind Hospital are responsible for providing care to patients with CLP (starting from birth to adolescent) and their caregivers. From the observations and interviews with nurses working in these units, they reported that both patients and their caregivers confronted many problems which affected their physical and mental health. Based on the Soukup's model (2000), the researchers used evidence triggers from clinical practice (practice triggers) and related literature (knowledge triggers) to investigate the problems. Objective: The purpose of this study was to investigate the problems of care for patients with CLP in the Tawanchai Center and out-patient surgical room of Srinagarind Hospital. Material and Method: The descriptive method was used in this study. For practice triggers, the researchers obtained the data from medical records of ten patients with CLP and from interviewing two patients with CLP, eight caregivers, two nurses, and two assistant workers. Instruments for the interview consisted of a demographic data form and a semi-structured questionnaire. For knowledge triggers, the researchers used a literature search. The data from both practice and knowledge triggers were collected between February and May 2016. The quantitative data were analyzed through frequency and percentage distributions and the qualitative data were analyzed through a content analysis. Results: The problems of care gained from practice and knowledge triggers were consistent and were identified as holistic issues, including 1) insufficient feeding, 2) risks of respiratory tract infections and physical disorders, 3) psychological problems, such as anxiety, stress, and distress, 4) socioeconomic problems, such as stigmatization, isolation, and loss of income, 5)spiritual problems, such as low self-esteem and low quality of life, 6) school absence and learning limitation, 7) lack of knowledge about CLP and its treatments, 8) misunderstanding towards roles among the multidisciplinary team, 9) no available services, and 10) shortage of healthcare professionals, especially speech language pathologists (SLPs). Conclusion: From evidence-triggers, the problems of care affect the patients and their caregivers holistically. Integrated long-term care by the multidisciplinary team is needed for children with CLP starting from birth to adolescent. Nurses should provide effective care to these patients and their caregivers by using a holistic approach and working collaboratively with other healthcare providers in the multidisciplinary team.

Telemedicine in Cleft Care: Reliability and Predictability in Regional and International Practice Settings.

BACKGROUND: Regional and international cleft care providers are challenged in their ability to deliver reliable, comprehensive care. Our institution utilizes video teleconferencing to facilitate initial evaluation and postoperative cleft care. This study describes our experience using telemedicine, generates a perioperative treatment algorithm using this technology, and compares cost-utility of telemedicine to in-person ambulatory visits when regional practices are involved. METHODS: A 5-year retrospective review of all cleft patients evaluated in an ambulatory setting was conducted. Patient demographics and location, number, and type of telemedicine visits were recorded. Specific treatment algorithms utilizing telemedicine for perioperative care for primary and secondary cleft lip and nasal repair, palatoplasty, and operation for velopharyngeal insufficiency are described. A cost-utility analysis was performed comparing distances between patient homes and primary hub versus telemedicine clinic sites. RESULTS: Five hundred nineteen patients were identified; 18.1% attended at least 1 teleconferencing visit. Postoperative follow-up was 100%. The majority of screening, preoperative, and postoperative care was provided using telemedicine. In-person evaluations were performed when intraoral assessments were necessary. Telemedicine visits were associated with an average savings of 239 miles per visit in the United States and 578 miles per visit in Mexico. CONCLUSIONS: Video teleconferencing can be used to provide comprehensive regional and international cleft care to facilitate initial evaluations and consistent follow-up. This technology can alleviate the travel burden on families and cleft care providers practicing over a large geographic radius.

International confederation for cleft lip and palate and related craniofacial anomalies task force report: holistic outcomes.

Objective : This paper describes the process and outcomes of the 2013 American Cleft Palate-Craniofacial Association task force on Holistic Outcomes. The goals and membership of the task force are presented. Methods : Using internet communication, the group introduced themselves, shared ideas and information related to holistic assessment and implementation of using a validated holistic measure, the Child Oral Health Impact Profile (COHIP) at participating international sites. Results : Data from the sites were analyzed using descriptive statistics. Administration of the COHIP was successful. It varied from self-completion as well as verbal presentation due to language differences and a function of the short time period to complete collection. Additionally qualitative comments were reported by the task force site directors. Conclusions : Future directions for holistic assessment and communication among task force members and sites were discussed at the Congress and are presented in this report.

Parental experiences of cleft lip and palate services.

In 1995 a cleft liaison service was developed in a health and social care trust which comprises primary and secondary care. The service team includes hospital and community midwives, health visitors and a consultant orthodontist who had a particular interest, and experience in the care of children born with a cleft and often this work was in addition to their existing roles. Anecdotal evidence indicated that the service was of great help to parents but it had never been formally evaluated. Therefore this evaluation was designed to explore the needs and views of parents who had a baby or child with a cleft of the lip and or palate, using a qualitative, cross sectional approach. Following 20 parents interviews responses were recorded, transcribed and a content analysis completed. Three main themes emerged relating to the parents' emotional experiences, their need for information and their experience of caring for a child with a cleft. This study has provided insight into the service delivered by the team and reiterates the need for retaining, maintaining and expanding this specialist service to other localities. Updating midwifery and health visiting staff in terms of knowledge and expertise was implicit to provide a responsive service to meet the needs of the child and family.

Treatment outcome for children born with cleft lip and palate.

In the management of children born with orofacial clefting there is a danger that the information on genetic and environmental influences together with data emerging from randomized controlled trials are divorced from the current reality of clinical care. It is important that treatment outcomes are constantly reviewed as new evidence unfolds but for many children born with a cleft, basic care will be more rapidly improved through examination of quality of outcomes than the higher level scientific exploration of gene-environment interactions and clinical trials. There are good examples of how scrutiny of outcomes has led to changes in service and an improvement of care. These changes have subsequently improved outcomes. These examples will be explored in some depth as well as the outcomes that are seen as relevant to carers and users. Finally the need to determine the influence of genetics and environments on outcomes is seen as the ultimate goal of total care. If we are clear as to how outcomes might be improved for an individual then reference to genetic determinants will provide a bespoke care pathway for surgical interventions, speech and language therapy, psychological and educational support as well as many other areas. This will however require a detailed longitudinal cohort study of all phenotypes to understand the gene-environment interactions, individual development and treatment outcomes. Thus, outcomes can be used to define service and policy, drive scientific investigation, but most importantly improve the care of those children born with a cleft.

Orthodontic treatment in the management of cleft lip and palate.

The orthodontic treatment of patients with all types of cleft lip and palate, a resume of facial growth and discussion on dental and occlusal development is presented. A fully integrated cleft team provides life-long interdisciplinary holistic treatment for patients born with an orofacial cleft. To understand the team approach to cleft care, this article should be read in close conjunction with those on speech therapy, surgery and alveolar bone grafting to determine the synergy required between these and other clinical specialties. Team working is essential to produce successful patient outcomes. Cleft teams and their constituent clinicians are at the forefront of patient outcome assessment and any aspiring cleft team member must understand how the continuous evaluation of outcome and burden of care will further refine clinical protocols for future patients.

Changing face of cleft care: specialized centers in developing countries.

The organization and management of specialized cleft lip and palate centers in developing countries are challenging because of the lack of financial resources devoted to the national health care system. The treatment of cleft lip and palate is of low priority for health care and budgets; however, gradual progress is possible. As an example of how care might be improved in the developing world, we suggest guidelines to strengthen the local cleft lip and palate centers in Brazil based on the ideal geographic distribution of cleft centers around the country, to achieve the following objectives: first, avoid patient's migration; second, facilitate patient's adherence; third, focus on a global and continuous multidisciplinary treatment; and fourth, avoid indiscriminate opening of nonprepared cleft lip and palate centers in our country. This ideal scenario would put the cleft lip and palate health attention on the right path in Brazil.

Effectiveness of nasopharyngoscopic biofeedback in clients with cleft palate speech: a systematic review.

OBJECTIVE: To conduct a systematic review analyzing the effectiveness of nasopharyngoscopic biofeedback in clients with cleft lip and palate and velopharyngeal dysfunction. METHOD: Extensive electronic search and analysis of the databases of Cochrane Library, MEDLINE, EMBASE, ERIC, PsycInfo, CINAHL, AMED, Journals@Ovid, and German Databases, including all papers published since 1970 plus a manual search of the Cleft Palate-Craniofacial Journal (1970-3/2010). RESULTS: Six studies met the inclusion criteria. Their analysis reflects a low level of evidence and a broad heterogeneity concerning age range, intervention methods, and outcome measurement. CONCLUSION: The analyzed studies show that nasopharyngoscopy may be effective only in combination with traditional speech therapy in helping patients with cleft palate speech optimize their velopharyngeal closure in articulation, but the quantity and quality of studies are limited.

Blood transfusion requirements in cleft lip surgery.

OBJECTIVE: Cleft lip surgery is a common procedure performed by surgeons worldwide. The aim of the study was to determine blood transfusion requirements and factors influencing blood transfusion in cleft lip surgery. METHODS: Transfusion rate in 100 consecutive patients who had cleft lip surgery was prospectively evaluated at the Lagos University Teaching Hospital, Nigeria. Data collected included age and sex of patients, type of cleft defects, type of surgery done, preoperative haematocrit, duration of surgery, amount of blood loss during surgery, the number of units of blood cross-matched and those used. Cardiovascular parameters at the point of transfusion were also recorded. Each patient was made to donate a unit of homologous blood prior to surgery. RESULTS: Mean estimated blood loss during surgery was 26.5 ± 47.1 ml. Most patients (92%) lost between 2 and 50 ml of blood. Mean estimated blood loss in unilateral cleft lip surgery was not significantly differently from that of bilateral cleft lip surgery (P=0.46). Only five patients (5%) required blood transfusion. The mean blood transfused was 50.0 ± 16.9 ml. All the patients transfused had a preoperative haematocrit of <30% (23-27%). The cross-match-to-transfusion ratio for cleft surgery was 20. The transfusion index was 0.05 and overall blood-ordering quotient was 20. CONCLUSION: Cleft lip surgery is a low volume blood loss surgery. Homologous blood donation prior to cleft lip surgery in patients with preoperative haematocrit of 30% or more is not necessary. For patients with preoperative haematocrit of less than 30%, type and screen of donated blood should be adequate.

Tratamiento de la fisura labio palatina / Treatment of patients with cleft lip and palate

La fisura labiopalatina es una de las malformaciones congénitas más frecuentes. La incidencia en Chile es de 1.7 por mil recién nacidos, lo que significa que nacen alrededor de 400 casos cada año. Las causas determinantes son: hereditarias en 20-25 por ciento, ambientales en 10 por ciento y desconocidas hasta ahora en 70 por ciento de los casos. Con respecto a la prevención, pareciera que la suplementación con Ácido Fólico en dosis altas antes y durante los primeros meses del embarazo puede reducir el riesgo. El tratamiento es multidisciplinario y se inicia en el periodo de recién nacido. Las cirugías primarias comprenden cierre de labio (3 meses) y paladar (12 meses). La participación de diferentes especialistas odontólogos, otorrino, genetista, fonoaudiólogas, psicólogo y enfermeras coordinadoras es fundamental para lograr resultados óptimos.

Cleft lip and palate are frequent congenital malformations, in Chile 1.7 per one thousand babies are born with clefts, that is, 400 cases each year. The main causes are: hereditary 20-25 percent, environmental 10 percent and unknown reasons 70 percent up to now. In relation with prevention it seems a high dose of folic acid before and during the first months of pregnancy might reduce the risk. The interdisciplinary treatment begins at early age. Primary surgeries consist of lip closure (at 3 month of age) and palate closure (at 12 months old). To achieve the best results is essential an interdisciplinary team such as a dentist, ENT, genetist, speech therapists, psychologist and coordinator nurses.

Community-based network system and interdisciplinary management for children with cleft-lip/palate.

OBJECTIVE: To propose a community-based network system and interdisciplinary management for children with cleft lip/ palate, applicable to Thailand and other developing countries. MATERIAL AND METHOD: A network was developed for the care of patients with cleft lip/palate by combining primary health care, community-based rehabilitation and institutional expertise (Tawanchai Center), Five workshops were conducted, including: 1) network development for cleft lip-palate care in the new millennium; 2) a multi-center study on the incidence and etiology of oral clefts and associated abnormalities in Northeast Thailand; 3) establishment of a Network for Children with Cleft Lip/Palate care in Northeast Thailand, including: 3.1) Skill development in cleft lip/palate care for parents and family; 3.2) a community-based model for speech disorders for children with cleft lip/palate in developing countries and for holistic nursing care for children with cleft lip/palate in developing countries; and, 4) development of interdisciplinary team system and network for holistic care for community-based quality of life, health promotion, speech and language intervention for Thai cleft lip/palate. RESULTS: A community-based network system model with interdisciplinary care was developed. CONCLUSION: A community-based network system model with interdisciplinary care can be applied for children with cleft lip/ palate in Thailand and developing countries where there exists a lack of coordinated multidisciplinary services. We plan to implement such a system in the near future.

Presurgical cleft lip management: nasal alveolar molding.

Continued advancement in the comprehensive care of children with cleft lip and palate has resulted in numerous innovative treatment protocols. The cooperation of numerous specialties has continued to expand the options for difficult cases. A high standard for aesthetic and functional results has been established. Presurgical treatment of a cleft alveolus and its associated soft tissues with presurgical orthopedics is just one of these techniques. Differing opinions of the effectiveness, growth disturbances, and additional costs of presurgical molding are often debated, but the concepts should be understood by any cleft surgeon or orthodontist involved in cleft care.

A tale of two systems: beliefs and practices of South African Muslim and Hindu traditional healers regarding cleft lip and palate.

OBJECTIVES: This South African study compared the views of 15 Muslim and 8 Hindu traditional healers regarding the etiology and treatment of craniofacial clefts, reasons for people consulting with them, and collaboration with Western professionals. DATA ANALYSIS: The original data were collected via individual interviews. Secondary data analysis was conducted to highlight common themes. RESULTS: Four Hindu and 12 Muslim healers believed that the condition was God sent. Both groups acknowledged the existence of various superstitions within their communities. For example, if a pregnant woman handled a sharp object during an eclipse, her infant could be born with a cleft. All Hindu healers also attributed clefts to karma. All the Muslim healers counseled patients and families. Fourteen referred people for medical help, 10 emphasized the importance of prayer, and 3 recommended the wearing of amulets containing a prayer. No Hindu healers provided direct treatment. Three advised parents to fast, six arranged fire and purification ceremonies in the temples, and three consulted the person's astrological chart to dispel any bad karma. Both groups of healers advised people to give to charity. Eight Hindu healers and eight Muslim healers believed that people consulted with them because of cultural influences and because they alleviated feelings of guilt. Four Hindu and 13 Muslim healers favored collaboration with Western practitioners. CONCLUSIONS: Findings highlight the need for culturally sensitive rehabilitation practices, collaboration, referrals, and information sharing between Eastern and Western health care practitioners.

Cultural and religious components in Nigerian parents' perceptions of the aetiology of cleft lip and palate: implications for treatment and rehabilitation.

The present study was conducted to find out the perceptions of mothers from two Nigerian ethnic groups who had children with cleft lip and palate (CLP) about the aetiology of the defect. Mothers of 16 children with CLP from the Yoruba ethnic group who attended the maxillofacial clinic of the Obafemi Awolowo University teaching hospital in southern Nigeria and 20 children with CLP from the Hausa/Fulani ethnic group who attended the maxillofacial clinic of the University of Maiduguri teaching hospital in northeastern Nigeria were interviewed over an 8-month period. We used standardised interviews including questions with ethnographic components to allow us to collect information about traditional beliefs about clefts. Interviews were recorded on tape for later analysis. Thirteen of the 16 parents from the Yoruba group attributed the aetiology of CLP to supernatural forces (evil spirits and ancestral spirits), while 16 of the 20 Hausa/Fulani parents attributed it to the "will of God". Twelve of 16 Yoruba parents had consulted traditional healers for treatment before coming to the hospital. Various plants and animal products were used to treat clefts and 10 of the Yoruba parents were referred to the hospital for further treatment by the traditional healers. Cultural and religious factors seem to have an important role in the explanations, labels and treatment that followed the birth of a child with CLP in this environment. There is a need for greater collaboration and sharing of information between modern medical practitioners and traditional healers.

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.

Approaches of South African traditional healers regarding the treatment of cleft lip and palate.

OBJECTIVE: Due to the large number of Black South Africans known to consult with traditional healers and the influential role they play in the developing world, this study investigated the approaches of a group of 15 traditional healers toward the treatment of cleft lip and palate. DESIGN: An exploratory-descriptive, qualitative research design was employed, which involved the use of standardized, semistructured interviews, conducted with the assistance of an interpreter who was fluent in several African languages. SETTING: Interviews were conducted outdoors in places in which traditional healers usually consult with their patients. These areas were in the fields close to the traditional healers' homes or under a highway bridge in the Johannesburg inner city. PARTICIPANTS: Individual interviews were conducted with 15 African traditional healers who had been practicing in their callings for at least 1 year. RESULTS: Traditional healers interviewed had treated one to six persons with a cleft lip, cleft palate, or both. Most informants believed that clefts were caused by the ancestors, spirits, and witchcraft. A variety of plant and animal products were used to treat these conditions and were augmented by spiritual resources from the ancestors. All except one healer had undergone formal training, although they had received no specific training relative to cleft lip and palate. Most participants reported referring patients to Western health care practitioners who were referred to as modern doctors but did not receive reciprocal referrals from these professionals. Patients generally consulted with traditional healers because this approach was part of their culture. CONCLUSIONS: These findings have important implications for health care professionals as well as traditional healers in terms of cross-cultural consultation, collaboration, and information sharing with regard to cleft lip and palate; the potential use of traditional healers in primary health care and education; and further research.

Dental treatment in Anglo-Saxon England.

Anglo-Saxon medical literature suggests that care of the teeth was largely limited to non-invasive treatment. Cures, mainly for toothache, were based on herbal remedies, charms and amulets. Herbal potions also treated oral problems as diverse as caries and facial deformities. However, surgical intervention for cleft lip is mentioned in the later documents. Skeletal evidence confirms that cleft lip and palate was definitely known to the Anglo-Saxons. A possible dentist's grave has been identified.