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Background: Little is known about population-based maternal, child, and system characteristics associated with high hospital resource use for children with orofacial clefts (OFC) in the US., Methods: This was a statewide, population-based, retrospective observational study of children with OFC born between 1998 and 2006, identified by the Florida Birth Defects Registry whose records were linked with longitudinal hospital discharge records. We stratified the descriptive results by cleft type [cleft lip with cleft palate, cleft lip, and cleft palate] and by isolated versus nonisolated OFC (accompanied by other coded major birth defects). We used Poisson regression to analyze associations between selected characteristics and high hospital resource use (≥90th percentile of estimated hospitalized days and inpatient costs) for birth, postbirth, and total hospitalizations initiated before age 2 years., Results: Our analysis included 2,129 children with OFC. Infants who were born low birth weight (<2500 grams) were significantly more likely to have high birth hospitalization costs for CLP (adjusted prevalence ratio: 1.6 [95% confidence interval: 1.0-2.7]), CL (adjusted prevalence ratio: 3.0 [95% confidence interval: 1.1-8.1]), and CP (adjusted prevalence ratio: 2.3 [95% confidence interval: 1.3-4.0]). Presence of multiple birth defects was significantly associated with a three- to eleven-fold and a three- to nine-fold increase in the prevalence of high costs and number of hospitalized days, respectively; at birth, postbirth before age 2 years and overall hospitalizations., Conclusion: Children with cleft palate had the greatest hospital resources use. Additionally, the presence of multiple birth defects contributed to greater inpatient days and costs for children with OFC., (© 2015 Wiley Periodicals, Inc.)

Background: Little is known about the barriers faced by families of children with birth defects in obtaining healthcare. We examined reported perceived barriers to care and satisfaction with care among mothers of children with orofacial clefts., Methods: In 2006, a validated barriers to care mail/phone survey was administered in North Carolina to all resident mothers of children with orofacial clefts born between 2001 and 2004. Potential participants were identified using the North Carolina Birth Defects Monitoring Program, an active, state-wide, population-based birth defects registry. Five barriers to care subscales were examined: pragmatics, skills, marginalization, expectations, and knowledge/beliefs. Descriptive and bivariate analyses were conducted using chi-square and Fisher's exact tests. Results were stratified by cleft type and presence of other birth defects., Results: Of 475 eligible participants, 51.6% (n = 245) responded. The six most commonly reported perceived barriers to care were all part of the pragmatics subscale: having to take time off work (45.3%); long waits in the waiting rooms (37.6%); taking care of household responsibilities (29.7%); meeting other family members' needs (29.5%); waiting too many days for appointments (27.0%); and cost (25.0%). Most respondents (72.3%, 175/242) felt "very satisfied" with their child's cleft care., Conclusion: Although most participants reported being satisfied with their child's care, many perceived barriers to care were identified. Due to the limited understanding and paucity of research on barriers to care for children with birth defects, including orofacial clefts, additional research on barriers to care and factors associated with them are needed., (© 2014 Wiley Periodicals, Inc.)

© 2014 The Authors Birth Defects Research Part A: Clinical and Molecular Teratology Published by Wiley Periodicals, Inc., (© 2014 Wiley Periodicals, Inc.)

Background: According to the 2014 Surgeon General's Report, smoking in early pregnancy can cause orofacial clefts. We sought to examine the implications of this causal link for the potential prevention of orofacial clefts in the United States., Methods: Using published data on the strength of the association between orofacial clefts and smoking in early pregnancy and the prevalence of smoking at the start of pregnancy, we estimated the attributable fraction for smoking as a cause of orofacial clefts. We then used the prevalence of orofacial clefts in the United States to estimate the number of orofacial clefts that could be prevented in the United States each year by eliminating exposure to smoking during early pregnancy. We also estimated the financial impact of preventing orofacial clefts caused by maternal smoking based on a published estimate of attributable healthcare costs through age 10 for orofacial clefts., Results: The estimated attributable fraction of orofacial clefts caused by smoking in early pregnancy was 6.1% (95% uncertainty interval 4.4%, 7.7%). Complete elimination of smoking in early pregnancy could prevent orofacial clefts in approximately 430 infants per year in the United States, and could save an estimated $40.4 million in discounted healthcare costs through age 10 for each birth cohort., Conclusion: Understanding the magnitude of the preventable burden of orofacial clefts related to maternal smoking could help focus smoking cessation efforts on women who might become pregnant., (© 2014 Wiley Periodicals, Inc.)

Background: Information on travel distance and time to care for children with birth defects is lacking. We examined factors associated with travel distance and time to cleft care among children with orofacial clefts., Methods: In 2006, a mail/phone survey was administered in English and Spanish to all resident mothers of children with orofacial clefts born 2001 to 2004 and identified by the North Carolina birth defects registry. We analyzed one-way travel distance and time and the extent to which taking a child to care was a problem. We used multivariable logistic regression to examine the association between selected sociodemographic factors and travel distance (≤60 miles and >60 miles) and time (≤60 min and >60 min) to cleft care., Results: Of 475 eligible participants, 51.6% (n = 245) responded. Of the respondents, 97.1% (n = 238) were the child's biological mother. Approximately 83% (n = 204) of respondents were non-Hispanic White; 33.3% (n = 81) were college educated; and 50.0% (n = 115) had private health insurance. One-way mean and median travel distances were 80 and 50 miles, respectively (range, 0-1058 miles). One-way mean and median travel times were 92 and 60 min, respectively (range, 5 min to 8 hr). After adjusting for selected sociodemographics, travel distance varied significantly by maternal education, child's age, and cleft type. Travel time varied significantly by child's age. Approximately 67% (n = 162) reported taking their child to receive care was not a problem., Conclusion: Approximately 48% of respondents traveled > 1 hr to receive cleft care. Increasing access to care may be important for improving health outcomes among this population., (Copyright © 2013 Wiley Periodicals, Inc.)

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.