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Objective: The objective of this study was to develop and test the reliability of the THAICLEFT Quality of Life (QoL) questionnaire for families of children coping with the problems associated with cleft lip/palate (CLP)., Material and Method: After reviewing the literature on QoL measurements, the THAICLEFT QoL questionnaire was developed. The 27 families registered with the Tawanchai CLP service registry completed the questionnaire., Results: The Cronbach's alpha, i.e., the internal consistency and reliability, of 24 Quality of Life questionnaires was calculated. Values > 0.7 are considered acceptable and the value of the THAICLEFT QoL questionnaire was 0.861., Conclusion: Using the THAICLEFT QoL questionnaire can help the healthcare provider to support parents and understand whether they are able to care for the patients and their psycho-economic needs.

Background: The health care debate in the United States centers on a concept that is fundamental to any service-based profession yet minimally integrated into the health care community: value creation. Value in health care has been defined as outcome achieved per dollar spent, and focuses on the patient. Many of the new strategies proposed to restructure health care delivery in the United States aim to study and improve both components of this equation. Indeed, it is a near guarantee that providers will soon be responsible for reporting their outcomes and resource use and will be benchmarked by these metrics. In addition, patients have a right to understand the value they receive from their care providers., Methods: In this report, the authors evaluate the current state of preparedness for the assessment of value in care delivery in the field of cleft lip-cleft palate based on literature review., Results: There has been important progress in the definition and assessment of basic outcomes in cleft lip-cleft palate care, largely through formation of intercenter collaborations. However, many fundamental challenges face the cleft community, especially in North America. Standardization of data collection and outcomes measurement and reporting are particularly lacking. In addition, few data exist regarding the cost of cleft care., Conclusions: The weight of the evidence reveals that the cleft community is not prepared to assess, and thus improve, the value offered to patients. The authors address key challenges and outline future directions.

Background: The considerable number of surgical procedures performed each year, as well as the significant burden of surgical disease globally, have brought surgery into the arena of public health concerns. Several articles have shown the cost-effectiveness of surgical interventions in the developing world. The authors suggest that surgery has an important role in global public health, specifically through international volunteer surgical missions as a vehicle for delivery., Methods: Eight Operation Smile medical missions from 2008 are analyzed using the disability-adjusted life year (DALY) framework and disability weights from the life tables of the first Disease Control Priorities Project (DCP1). The DCP1 life tables suggest that the entire burden of disease from a cleft lip and palate is incurred within the first 4 years of life. The same group of missions is analyzed using life tables modified by the authors to reflect the disability associated with cleft lip and palate that goes beyond the first 5 years of life., Results: Using the DCP1 life tables, the cost per patient during the eight Operation Smile missions analyzed was $278 and $1827 with an average of $796. Using the life tables modified by the authors, the cost per patient was between $7.36 and $96.04 (average $33.94)., Conclusions: The absence of disability weights for untreated cleft lip and palate after the fifth year of life does not fit with the reality of living with an unrepaired cleft lip or palate. The authors conclude that secondary interventions alleviate disability and should enable an individual to approach a zero residual disability weight.

Orofacial clefts are common birth defects that may impose a large burden on the health, quality of life, and socioeconomic well-being of affected individuals and families. They also result in significant healthcare use and costs. Understanding the impact of orofacial clefts on these outcomes is important for identifying unmet needs and developing public policies to reduce the burden of orofacial clefts at the individual, family and societal levels. This paper reviews and summarizes the main findings of recent studies that have evaluated the impact of orofacial clefts on these outcomes, with a focus on quality of life, socioeconomic outcomes, long-term health, and healthcare use and costs. Several studies identify an increased burden of orofacial clefts on these outcomes, but some of the findings are inconsistent. A summary of the primary limitations of the studies in this area is presented, along with recommendations and directions for future research.

Objectives: To assess retrospectively the cumulative costs for the long-term oral rehabilitation of patients with birth defects affecting the development of teeth., Methods: Patients with birth defects who had received fixed reconstructions on teeth and/or implants > or =5 years ago were asked to participate in a comprehensive clinical, radiographic and economic evaluation., Results: From the 45 patients included, 18 were cases with a cleft lip and palate, five had amelogenesis/dentinogenesis imperfecta and 22 were cases with hypodontia/oligodontia. The initial costs for the first oral rehabilitation (before the age of 20) had been covered by the Swiss Insurance for Disability. The costs for the initial rehabilitation of the 45 cases amounted to 407,584 CHF (39% for laboratory fees). Linear regression analyses for the initial treatment costs per replaced tooth revealed the formula 731 CHF+(811 CHF x units) on teeth and 3369 CHF+(1183 CHF x units) for reconstructions on implants (P<.001). Fifty-eight percent of the patients with tooth-supported reconstructions remained free from failures/complications (median observation 15.7 years). Forty-seven percent of the patients with implant-supported reconstructions remained free from failures/complications (median observation 8 years). The long-term cumulative treatment costs for implant cases, however, were not statistically significantly different compared with cases reconstructed with tooth-supported fixed reconstructions. Twenty-seven percent of the initial treatment costs were needed to cover supportive periodontal therapy as well as the treatment of technical/biological complications and failures., Conclusion: Insurance companies should accept to cover implant-supported reconstructions because there is no need to prepare healthy teeth, fewer tooth units need to be replaced and the cumulative long-term costs seem to be similar compared with cases restored on teeth.

Background: National data that examine health costs among children with special needs are limited and do not address children with orofacial clefts (OFC). This study examines Medicaid expenditures among children with and without OFC., Methods: North Carolina vital statistics, health services, birth defects registry, and Medicaid enrollment and paid claims were linked to identify resident children born 1995-2002 with and without OFC who were continuously enrolled in Medicaid. Outcome measures included average cost per child for medical, inpatient, outpatient, dental, well-child care, mental health, and home health. Average expenditures per child were also determined and were examined by the child's phenotypic characteristics including type of cleft and whether the defect was isolated or non-isolated. Expenditure ratios were calculated to compare cases and controls and differences in expenditures among cases by cleft type and by isolated/non-isolated occurrence., Results: During infancy, average mental health expenditure per child with OFC was 37.2 times higher than for a child without OFC. Average home health expenditure per case was 45.0 times higher than for a control. Mean expenditure per child with OFC was $22,642 compared to $3,900 for an unaffected child. Mean expenditure for a child with cleft palate and child with cleft lip with cleft palate were about three times more than a child with cleft lip alone. Mean expenditure per child with non-isolated OFC also was substantially higher than the expenditure for a child with isolated OFC., Conclusions: Children with OFC have significantly higher health-related Medicaid expenditures than unaffected children. These findings are important for targeting care coordination and early intervention and for program planning and policy development related to special needs children.

The National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention conducted a workshop in January 2006, entitled "Prioritizing a Research Agenda for Orofacial Clefts." The goals of the meeting were to review existing research on orofacial clefts (OFCs), identify gaps in knowledge that need additional public health research, and develop a prioritized research agenda that can help guide future public health research. Experts in the field of epidemiology, public health, genetics, psychology, speech pathology, dentistry, and health economics participated to create the research agenda. Research gaps identified by the participants for additional public health research included: the roles of maternal nutrition, obesity, and diabetes in the etiology of OFCs; psychosocial outcomes for children with OFCs; the quality of life for families and children with OFCs; and the health care costs of OFCs. To create the research agenda, the participants prioritized the research gaps by public health importance, feasibility, and outcomes of interest. This report summarizes the workshop.

A series of 46 procedures (42 patients) was performed on youth with cleft lip-palate deformities in Lanzhou, China. Patients' ages ranged from 6 months to 18 years. There were no short-term complications in this series, which included many advanced cases. The estimated cost per patient was 1590 US dollars. Youth with unrepaired cleft lip-palate in western China can be treated in a cost-effective manner.

France has a population of about 60 million peoples and each ten years data about the standard of living are collected by the central bureau of statistics, we considered the collection of data on 5000 households in 1999 in our geographical area would afford a unique opportunity to compare the equivalent status of French adults with repaired cleft of the lip and palate (CLP). Aspects of social adjustment were investigated in a sample of 82 French adults 18-35 years old with repaired complete unilateral cleft of the lip and palate (CLP). All subjects received a standardized regimen of care from the Burgundy cleft palate team of Dijon. The investigation, based on response to a questionnaire, partly replicated a national survey of social and economic life in the population (Standard of living survey Burgundy, INSEE France 1999), so that adults with complete clefts could be compared with a large control sample of the same age. The control group was constituted by subjects between 18 and 35 years in the standard of living survey Burgundy 1999, INSEE France, they were taken from a regional probability sample of households. This report covers education, employment, and marriage. The significant difference between groups was assessed by: Student's t-test or analysis of variance for continuous variables and chi2 test for categorical variables. The results demonstrated that there are significant differences in educational attainment and employment between adults with cleft of the lip and palate and other people. Fewer with cleft of the lip and palate marry, and when they marry they do so later in life, scholarship history showed significant delay in the cleft of the lip and palate group, independence regarding housing was lower in the cleft of the lip and palate group. If cleft of the lip and palate adults functioned within normal limits with regard to employment. However, levels of income were substantively lower than control groups. It would appear that cleft subjects experience some limitation in their ability to secure vocational and economic rewards from society. As a conclusion we can say regarding our results that the cleft of the lip and palate group, even with the smallest degree of malformation (unilateral without associated malformation), showed a significant delay in the independence process.

Objectives: To determine the causes of late presentation of patients with cleft lip and palate in Nepal., Design: Cross-sectional survey using interviews of patients' parents., Setting: The study was carried out between April 1999 and September 1999 in Western Regional Hospital (WRH), Pokhara, Nepal, a secondary care center., Patients: All patients with cleft lip and palate coming to WRH outpatient department or coming for surgery were included in the study. Those without parents were excluded. A total of 53 patients were included., Results: Forty-two (79%) presented after 3 months. The most common reasons were lack of knowledge of availability of repair (31%), lack of accessibility of care (29%), and lack of finances (24%)., Conclusions: In Nepal, the majority of patients with cleft present late, mainly because of a lack of awareness of cleft services, the remoteness of available services, or a lack of finances. These obstacles can be largely surmounted through itinerant services.

Over an 8-month period a cleft project was organised across Uganda. The aim of the project was to travel to as many districts as possible in the available time and repair all the cleft patients who could be mobilised. Local surgeons were trained and the results of the project were assessed. This was a prospective study which assessed immediate patient outcome, feedback from participating hospitals and cost. The team visited 20 hospitals, many in remote rural areas. All equipment necessary for surgery was transported to the hospitals. 336 cleft lip repairs and 41 cleft palate repairs were performed on 343 patients. There was no anaesthetic morbidity or mortality and no immediate perioperative morbidity. Two cleft lip repairs developed partial wound dehiscence and there was one palatal fistula. Five local surgeons underwent cleft training. All centres participating in this project requested further visits. The total cost for each cleft repair was 27 pounds sterling. Visiting remote centres with a mobile team is an efficient, safe and cost-effective method to treat the large numbers of unrepaired clefts in developing countries., (Copyright 2000 The British Association of Plastic Surgeons.)

Objective: To compare different methods to estimate the confidence interval of the incremental cost-effectiveness ratio (ICER)., Methods: The adequacy of Fieller intervals and three methods for calculating bootstrap intervals are compared based on a simulation of 10,000 trials, using data from one trial., Results: Both Fieller and bootstrap methods lead to unsatisfactory results when the difference in effectiveness is approximately zero. Where this difference is significant, the four methods for calculating confidence intervals for ICER do not give very different results, but Fieller's interval performs best., Conclusions: Since Fieller's confidence limits are relatively easy to compute compared with bootstrap simulations, we recommend using this method.

Insurance carriers affected decisions regarding admissions and length of stay in our hospital in 1987. Charts were reviewed retrospectively to determine whether this affected morbidity and mortality rates following cleft lip and palate operations in infants. Two periods were studied: May of 1983 through April of 1987 (group I) and April of 1987 through May of 1991 (group II). A total of 248 infants with cleft lip and/or palate underwent 398 operations: lip adhesion (74), definitive lip repair (130), and palatoplasty (194). Half were performed in each period. Admission status, length of stay, length of operation, and short-term morbidity were documented. Morbidity included spontaneous and traumatic lip dehiscence, palatal dehiscence, and palatal fistula. Intergroup analysis was performed by the chi-squared method; p < or = 0.05 was statistically significant. In group I, 93 percent of patients were admitted before surgery. In group II, 5 percent were admitted before surgery and 79 percent the day of surgery. Hospital stay decreased nearly 2 days for each operation. There was no statistically significant difference between groups in distribution of operations, length of operations, or morbidity: lip surgery complications (p = 0.263), palatoplasty complications (p = 0.624). Reductions of hospital admissions and length of stay do not affect outcome of cleft lip and palate surgery in infants. The reduction in hospital days is equivalent to a savings of $138,000 (1991 dollars).

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.

The following is a discussion of the formidable obstacles to cleft palate rehabilitation in Indonesia, including frequent feeding deaths, lack of timely surgery, lack of speech therapists, and lack of follow-up opportunities. It describes the work of a remarkable group of Indonesian professionals who, along with a few interested Western associates, are searching for ways to provide treatment and care for needy patients with cleft lip and palate. It details the various strategies being attempted to overcome some of these obstacles.

Parents of children with cleft lip and/or palate (42 women and 35 men) participated in a study on intentions to use prenatal diagnosis of cleft by ultrasound in subsequent pregnancies. Based on the Health Belief Model (HBM) [Rosenstock, 1974], parents' cognitions on 4 factors were measured by questionnaires: "susceptibility" and "severity perceptions," "benefits" and "barriers" evaluations. Most parents perceived the defect as severe. Over-estimation of recurrence risks was predominant even among parents who had received genetic counseling. Results showed that most parents intend to utilize prenatal diagnosis but do not intend to abort an affected fetus. Subjects' reported reasons represented 3 thematic categories: cognitive (the need to know), emotional, and behavioral. Parents' intentions to diagnose and to terminate were related to the factors predicted by the HBM model. Regression analyses indicated that 38% of the variance in intentions to diagnose and 56% of the variance in intentions to terminate could be explained by the studied variables. The best predictor of both intentions was the perceived benefits of the diagnosis. Implications of these findings for genetic counseling are discussed.

An effort was made to determine the amount of funds budgeted in each of the 50 U.S. states for total rehabilitation of patients with cleft lip and/or cleft palate. Questionnaires were sent following a pilot letter to the directors of each state Department of Health. Total funds per patient ranged from $17,442 for Delaware to a low of $426 for Wisconsin. Dental funds per patient ranged from $4,214 dollars for Wyoming to a low of $192 for New York.