Academic Achievement Among Children With Nonsyndromic Orofacial Clefts : A Population-Based Study.

OBJECTIVE: Children with orofacial clefts (OFCs) may experience poor reading proficiency, learning disabilities, and academic underachievement. We examined the association between nonsyndromic (NS) OFCs and end-of-grade (EOG) performance in reading and math from third through eighth grade in a sample subgroup. PARTICIPANTS: We identified a cohort of 559 children with NS-OFCs and 6822 children without birth defects, classifying cleft type by cleft lip alone, with or without cleft alveolar ridge (CL); cleft lip with cleft palate (CL+P); and cleft palate only (CP). MAIN OUTCOME MEASURES: Using logistic regression, we estimated the odds of not meeting grade-level standards among children with NS-OFCs compared to unaffected peers. Using longitudinal analyses, we estimated the odds of not meeting grade-level standards and average change in test scores through eighth grade. RESULTS: Children with NS-OFCs were 1.22 (95% CI: 0.96, 1.83) times as likely not to meet grade-level standards in reading compared to unaffected peers. The effect was similar for math (OR: 1.17; 95% CI: 0.92, 1.48). Children with CL+P were 1.33 (95% CI: 0.86, 1.83) and 1.74 (95% CI: 1.19, 2.56) times as likely not to meet grade-level standard in reading and in both subjects, respectively, compared to unaffected peers. The average rate of change in both scores was similar for children with and without OFCs. CONCLUSIONS: Poor academic performance appears greatest for children with CL+P, a finding compatible with previous observations and hypothesized mechanisms associating orofacial clefts with subtle abnormalities in brain development. Academic performance monitoring and referral for academic assistance is warranted.

Issues involved in the phenotypic classification of orofacial clefts ascertained through a state birth defects registry for the North Carolina Cleft Outcomes Study.

BACKGROUND: Epidemiologic studies involving birth defects are extremely sensitive to phenotype accuracy and precision. We devised a case review and classification protocol for a project to study school achievement in children with idiopathic, nonsyndromic orofacial clefts to improve the reliability of phenotypic classification from the statewide birth defects registry. METHODS: Surveillance-program abstraction data and medical records at the birth or treating hospitals were used when available. Exclusion criteria included: median cleft lip; Tessier cleft; premaxillary agenesis; presence of a recognizable syndrome, phenotype, association, or sequence (other than Robin sequence); clefts with other malformations not considered to be normal or common variants in the newborn; and cases with documented or suspected genetic or teratogenic causes. RESULTS: Of 712 children identified with orofacial clefts, 153 were excluded, leaving 559 nonsyndromic orofacial cleft cases of unknown cause in the final study. These cases were grouped into the following clinically meaningful types: cleft lip with or without cleft alveolus; cleft lip and cleft palate; and cleft palate only. This review and classification process resulted in the elimination of 21.5% of the original cohort of identified cases, with most exclusions being due to suspected syndromic associations. CONCLUSION: Verbatim descriptions of the clinical findings are critical for accurate classification of diagnoses. This review process improved the precision of orofacial cleft phenotype classification for our study. Precision would have been further improved if all of the cases had verbatim descriptions of diagnoses and all medical records could have been reviewed by the classification team.

Shared Surgical Decision Making and Youth Resilience Correlates of Satisfaction With Clinical Outcomes.

The aim of this study was to identify factors associated with youth satisfaction with surgical procedures performed to address oral cleft or craniofacial conditions (CFCs). It was hypothesized that youth mental health, participation in decision making, perceived consequences of living with a CFC, and coping strategies would be associated with satisfaction with past surgeries. A total of 203 youth between the ages of 11 and 18 years (mean age = 14.5, standard deviation = 2.0, 61% male participants, 78% oral cleft) completed a series of questionnaires measuring depression, self-esteem, participation in decision making, condition severity, negative and positive consequences of having a CFC, coping, and satisfaction with past surgeries. Multiple regression analysis using boot-strapping techniques found that youth participation in decision making, youth perception of positive consequences of having a CFC, and coping accounted for 32% of the variance in satisfaction with past surgeries (P < 0.001). Youth age, sex, and assessment of condition severity were not significantly associated with satisfaction with surgical outcome. Depression, self-esteem, and negative consequences of having a CFC were not associated with satisfaction with past surgeries. Youth should be actively involved in the decision for craniofacial surgery. Youth who were more satisfied with their surgical outcomes also viewed themselves as having gained from the experience of living with a CFC. They felt that having a CFC made them stronger people and they believed that they were more accepting of others and more in touch with others' feelings because of what they had been through.

Academic outcomes of children with isolated orofacial clefts compared with children without a major birth defect.

OBJECTIVE: To compare academic outcomes between children with orofacial cleft (OFC) and children without major birth defects. DESIGN AND SETTING: In 2007-2008, we mailed questionnaires to a random sample of mothers of school-aged children with OFC and mothers of children without major birth defects (comparison group). The questionnaire included Likert-scale, closed-ended, and open-ended questions from validated instruments. We conducted bivariate and multivariable analyses on parent-reported educational outcomes and bivariate analyses on parent-reported presence of related medical conditions between children with isolated OFC and unaffected children. PATIENTS/PARTICIPANTS: A random sample of 504 parents of children with OFCs born 1996-2002 (age 5-12 years) were identified by the North Carolina Birth Defects Monitoring Program. A random sample of 504 parents of children without birth defects born 1996-2002 was selected from North Carolina birth certificates. Of the 289 (28.7%) respondents, we analyzed 112 children with isolated OFC and 138 unaffected children. MAIN OUTCOME MEASURES: Letter grades, school days missed, and grade retention. RESULTS: Parents of children with isolated OFC reported more developmental disabilities and hearing and speech problems among their children than comparison parents. Children with isolated OFC were more likely to receive lower grades and miss more school days than unaffected children. Because of the low response rate, results should be interpreted cautiously. CONCLUSION: Children with isolated OFC may have poorer academic outcomes during elementary school than their unaffected peers. Future studies are needed to confirm these results and determine whether these differences persist in later grades.

Barriers to care for children with orofacial clefts in North Carolina.

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.

Factors associated with distance and time traveled to cleft and craniofacial care.

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.

Maternal perspectives: qualitative responses about perceived barriers to care among children with orofacial clefts in North Carolina.

OBJECTIVE: To examine maternal perceptions of barriers to care of children with orofacial clefts (OFC) in a population-based survey that solicited open-ended qualitative responses. DESIGN AND SETTING: In 2006, a combination mail/phone survey was sent to all mothers of children with OFC. The questionnaire included 76 items. A final open-ended question was included for additional information about cleft-related care. The analysis included responses to the open-ended question and sociodemographic characteristics of the respondents. Qualitative responses were transcribed and entered into a qualitative software package for analysis, and common themes were elucidated. PARTICIPANTS/PATIENTS: The North Carolina Birth Defects Monitoring Program was used to identify all resident infants born with OFC from 2001 to 2004. Of 478 eligible mothers, 52.9% (n  =  248) responded to the survey, and 39.5% (n  =  98) responded to the final open-ended question. MAIN OUTCOME MEASURES: Percentage reporting problems accessing care, frequency of positive and negative comments, and indicators of financial, personal, and structural barriers to care. RESULTS: Of the 98 respondents, the majority (n  =  95, 96.99%) were the biological mother. Almost 40% of mothers indicated that accessing primary craniofacial care was a problem. Of those citing perceived barriers to care, the major issues cited were financial, structural, and personal barriers. CONCLUSIONS: Collaborative efforts between craniofacial centers and teams, health care systems, and birth defects registries are warranted to reduce perceived barriers to care among families of children with OFC. Further exploration of the themes and factors associated with barriers to care and services is needed.

Pilot study demonstrating effectiveness of targeted education to improve informed consent understanding in AIDS clinical trials.

Assessing and improving informed consent understanding is equally important as obtaining consent from participants in clinical trial research, but developing interventions to target gaps in participants' informed consent understanding remains a challenge. We used a randomized controlled study design to pilot test an educational intervention to improve actual informed consent understanding of new enrollees in the Adult AIDS Clinical Trial Group (AACTG). Questionnaires were administered to 24 enrollees to assess their baseline understanding on eight elements of informed consent associated with AIDS clinical trials. Enrollees who scored 18/21(85%) or less were randomly assigned to in-person, targeted education (intervention), or delayed education (control). Two follow-up assessments were administered. Repeated measures ANOVA was performed to determine intervention effectiveness in improving actual informed consent understanding over time. Actual understanding improved at the immediate post-intervention time point with a significant score difference of 2.5 when comparing the intervention and delayed groups. In addition, there was a significant score difference of 3.2 when comparing baseline to three-month follow-up for the two groups, suggesting a statistically significant intervention effect to improve actual understanding of the basic elements of informed consent. The findings demonstrated that one-time targeted education can improve actual informed consent understanding one week after the intervention, but retention of these concepts may require periodic monitoring to ensure comprehension throughout the course of a clinical trial.

Socio-demographic and AIDS-related factors associated with tuberculosis stigma in southern Thailand: a quantitative, cross-sectional study of stigma among patients with TB and healthy community members.

BACKGROUND: Tuberculosis (TB) remains one of the most important infectious diseases worldwide. A comprehensive approach towards disease control that addresses social factors including stigma is now advocated. Patients with TB report fears of isolation and rejection that may lead to delays in seeking care and could affect treatment adherence. Qualitative studies have identified socio-demographic, TB knowledge, and clinical determinants of TB stigma, but only one prior study has quantified these associations using formally developed and validated stigma scales. The purpose of this study was to measure TB stigma and identify factors associated with TB stigma among patients and healthy community members. METHODS: A cross-sectional study was performed in southern Thailand among two different groups of participants: 480 patients with TB and 300 healthy community members. Data were collected on socio-demographic characteristics, TB knowledge, and clinical factors. Scales measuring perceived TB stigma, experienced/felt TB stigma, and perceived AIDS stigma were administered to patients with TB. Community members responded to a community TB stigma and community AIDS stigma scale, which contained the same items as the perceived stigma scales given to patients. Stigma scores could range from zero to 30, 33, or 36 depending on the scale. Three separate multivariable linear regressions were performed among patients with TB (perceived and experience/felt stigma) and community members (community stigma) to determine which factors were associated with higher mean TB stigma scores. RESULTS: Only low level of education, belief that TB increases the chance of getting AIDS, and AIDS stigma were associated with higher TB stigma scores in all three analyses. Co-infection with HIV was associated with higher TB stigma among patients. All differences in mean stigma scores between index and referent levels of each factor were less than two points, except for incorrectly believing that TB increases the chance of getting AIDS (mean difference of 2.16; 95% CI: 1.38, 2.94) and knowing someone who died from TB (mean difference of 2.59; 95% CI: 0.96, 4.22). CONCLUSION: These results suggest that approaches addressing the dual TB/HIV epidemic may be needed to combat TB stigma and that simply correcting misconceptions about TB may have limited effects.

Flood, disaster, and turmoil: social issues in cleft and craniofacial care and crisis relief.

OBJECTIVE: To examine social issues in the conduct of cleft and craniofacial care through relief programs in disrupted crisis contexts. METHOD: Social, health policy, and ethical analyses. RESULTS: At best, craniofacial team care is multidisciplinary, coordinated, and sustained, requiring a long-term relationship between team members, patients, and families. Disasters and societal turmoil interrupt such relationships, causing craniofacial care to become a secondary concern. Providing craniofacial team care in a crisis setting requires rebuilding disrupted coordination and communication. Crisis relief care involves a complex set of expectations and responsibilities and raises issues such as (1) quality assurance, infection control, appropriate standards of care, and follow-up care/continuity; (2) equity of access to services and clinical ethics in the context of war and/or deprivation; (3) training of visitors in the local nation or site; (4) disciplinary composition of teams, interprofessional communication/rivalry, and credentials of clinicians; (5) ownership of the site and local visitor relations; (6) fundraising and marketing strategies; and (7) ethical issues in the doctor-patient relationship. CONCLUSIONS: Specific ethical standards for international cleft and craniofacial care delivery also apply to domestic and global crisis relief contexts. Guidance on issues related to professional experience, informed consent, and continuity of care will help care providers address social and ethical issues raised in crisis relief programs. This paper proposes that the Position Paper of the American Cleft Palate-Craniofacial Association (ACPA) on International Treatment Programs should be used as a template to develop and disseminate a set of standards that apply to crisis relief.

Natural disaster and crisis: lessons learned about cleft and craniofacial care from Hurricane Katrina and the West Bank.

Cleft care is generally characterized by staged, carefully timed surgeries and long-term, team-centered follow-up. Acute and chronic crises can wreak havoc on the comprehensive team care required by children with craniofacial anomalies. In addition, there is evidence that crises, including natural disasters and chronic disruptions, such as political turmoil and poverty, can lead to an increased incidence of craniofacial anomalies. The purpose of this article is to delineate the impact of acute and chronic crises on cleft care. Hurricane Katrina in New Orleans, Louisiana, in 2005, resulted in an acute crisis that temporarily disrupted the infrastructure necessary to deliver cleft care; chronic turmoil in the West Bank/Palestine has resulted in an absence of infrastructure to deliver cleft care. Through these central examples, this article will illustrate-through the prism of cleft care-the need for (1) disaster preparedness for acute crises, (2) changing needs following acute crises that may lead to persistent chronic disruption, and (3) baseline and long-term monitoring of population changes after a disaster has disrupted a health care delivery system.

How researchers define vulnerable populations in HIV/AIDS clinical trials.

In this study, we interviewed researchers, asking them to define vulnerable populations in HIV/AIDS clinical trials, and provide feedback on the federal regulations for three vulnerable populations. Interview data informed a conceptual framework, and were content analyzed to identify acceptability or disagreement with the regulations. Beginning with several characteristics of vulnerable enrollees identified by researchers, the conceptual framework illustrates possible scenarios of how enrollees could be considered vulnerable in clinical research. Content analysis identified barriers affecting HIV/AIDS researchers' ability to conduct clinical trials with pregnant women, prisoners, and children, for which the regulations specify additional protections. This study challenges current thinking about federal regulations' group-based approach to defining vulnerable populations.

A conceptual model exploring the relationship between HIV stigma and implementing HIV clinical trials in rural communities of North Carolina.

BACKGROUND: HIV/AIDS disproportionately affects minority groups in the United States, especially in the rural southeastern states. Poverty and lack of access to HIV care, including clinical trials, are prevalent in these areas and contribute to HIV stigma. This is the first study to develop a conceptual model exploring the relationship between HIV stigma and the implementation of HIV clinical trials in rural contexts to help improve participation in those trials. METHODS: We conducted focus groups with HIV service providers and community leaders, and individual interviews with people living with HIV/AIDS in six counties in rural North Carolina. Themes related to stigma were elicited. We classified the themes into theoretical constructs and developed a conceptual model. RESULTS: HIV stigma themes were classified under the existing theoretical constructs of perceived, experienced, vicarious, and felt normative stigma. Two additional constructs emerged: causes of HIV stigma (e.g., low HIV knowledge and denial in the community) and consequences of HIV stigma (e.g., confidentiality concerns in clinical trials). The conceptual model illustrates that the causes of HIV stigma can give rise to perceived, experienced, and vicarious HIV stigma, and these types of stigma could lead to the consequences of HIV stigma that include felt normative stigma. LIMITATIONS: Understanding HIV stigma in rural counties of North Carolina may not be generalizeable to other rural US southeastern states. CONCLUSION: The conceptual model emphasizes that HIV stigma--in its many forms--is a critical barrier to HIV clinical trial implementation in rural North Carolina.

Social support and delays seeking care after HIV diagnosis, North Carolina, 2000-2006.

Many adults in the USA enter primary care late in the course of HIV infection, countering the clinical benefits of timely HIV services and missing opportunities for risk reduction. Our objective was to determine if perceived social support was associated with delay entering care after an HIV diagnosis. Two hundred and sixteen patients receiving primary care at a large, university-based HIV outpatient clinic in North Carolina were included in the study. Dimensions of functional social support (emotional/informational, tangible, affectionate, and positive social interaction) were quantified with a modified Medical Outcomes Study Social Support Scale and included in proportional hazards models to determine their effect on delays seeking care. The median delay between diagnosis and entry to primary care was 5.9 months. Levels of social support were high but only positive social interaction was moderately associated with delayed presentation in adjusted models. The effect of low perceived positive social interaction on the time to initiation of primary care differed by history of alcoholism (no history of alcoholism, hazard ratio (HR): 1.43, 95% confidence interval (CI): 0.88, 2.34; history of alcoholism, HR: 0.71, 95% CI: 0.40, 1.28). Ensuring timely access to HIV care remains a challenge in the southeastern USA. Affectionate, tangible, and emotional/informational social support were not associated with the time from diagnosis to care. The presence of positive social interaction may be an important factor influencing care-seeking behavior after diagnosis.

Barriers and facilitators to HIV testing and linkage to primary care: narratives of people with advanced HIV in the Southeast.

Persons with unrecognized HIV infection forgo timely clinical intervention and may unknowingly transmit HIV to partners. However, in the USA, unrecognized infection and late diagnosis are common. To understand barriers and facilitators to HIV testing and care, we conducted a qualitative study of 24 HIV infected persons attending a Southeastern HIV clinic who presented with clinically advanced illness. The primary barrier to HIV testing prior to diagnosis was perception of risk; consequently, most participants were diagnosed after the onset of clinical symptoms. While most patients were anxious to initiate care rapidly after diagnosis, some felt frustrated by the passive process of connecting to specialty care. The first visit with an HIV care provider was identified as critical in the coping process for many patients. Implications for the implementation of Centers for Disease Control and Prevention HIV routine screening guidelines are discussed.

Special education use in elementary school by children with nonsyndromic orofacial clefts.

BACKGROUND: Children with nonsyndromic orofacial clefts (NS OFCs) may require exceptional children's (EC) services for academic delays. We examined EC service use of children with and without NS OFCs in NC in elementary school. METHODS: We included 559 children with NS OFCs and 6,822 children without birth defects who had NC educational records. We estimated prevalence ratios, trends in enrollment, and characteristics of eligibility classification using descriptive statistics and logistic regression by cleft subtype and race/ethnicity. We estimated the odds of third grade retention by EC enrollment using logistic regression with inverse probability of treatment weights. RESULTS: Children with NS OFCs were 3.02 (95% CI: 2.50, 3.64) times as likely to receive third grade special education (SE) services compared to unaffected peers. The prevalence odds was highest among children with CL+P (OR: 4.61, 95% CI: 3.49, 6.09) declining by 54% by fifth grade. The prevalence odds of SE for white children was approximately 1.50 times that for African American children in fourth and fifth grades. Approximately 33% of children with NS OFCs within each racial/ethnic group received SE in third grade. African American children were twice as likely to receive services under specific learning disability. Children with NS OFCs receiving EC services were 44% (OR: 0.56; 95% CI: 0.13, 2.38) less likely to be retained in third grade compared to children with NS OFCs who were not receiving services. CONCLUSIONS: Children with NS OFCs are more likely to receive SE services in elementary school compared to their unaffected peers. The eligibility category differed by racial/ethnic group.

Measuring stigma associated with tuberculosis and HIV/AIDS in southern Thailand: exploratory and confirmatory factor analyses of two new scales.

OBJECTIVE: To develop scales to measure tuberculosis and HIV/AIDS stigma in a developing world context. METHODS: Cross-sectional study of tuberculosis patients in southern Thailand, who were asked to rate their agreement with items measuring TB and HIV/AIDS stigma. Developing the scales involved exploratory and confirmatory factor analyses, internal consistency, construct validity, test-retest reliability and standardized summary scores. RESULTS: Factor analyses identified two sub-scales associated with both tuberculosis and HIV/AIDS stigma: community and patient perspectives. Goodness-of-fit was good (TLI = 94, LFI = 0.88 and RMSEA = 0.11), internal consistency was excellent (Cronbach's alphas 0.82-0.91), test-retest reliability was moderate, and construct validity showed an inverse correlation with social support. CONCLUSION: Our scales have good psychometric properties that measure stigma associated with tuberculosis and HIV/AIDS and allow assessment of stigma from community and patient perspectives. Their use will help document the burden of stigma, guide the development of interventions and evaluate stigma reduction programmes in areas with a high HIV/AIDS and tuberculosis burden.

How should HIV vaccine efficacy trials be conducted? Diverse U.S. communities speak out.

Developing an effective vaccine remains a critical long-term approach to HIV prevention. Every efficacy trial should be responsive to the concerns of participating communities because the successful development of an HIV preventive vaccine will require long-term involvement of people who have been marginalized and who distrust the government and biomedical research. Using qualitative interviews and purposive sampling, we elicited recommendations regarding how vaccine efficacy trials should be conducted from 90 members of communities that have been disproportionately affected by HIV/AIDS: injection drug users, gay men, and African Americans. The most common recommendation was for complete disclosure of all aspects of the trial. Other themes included participant and community education, who to include in trials, preventing harm, trust, community involvement, researcher attributes, and respect for participants. Developing positive, respectful and collaborative experiences with community members will facilitate vaccine research because negative experiences and unfavorable community reactions can greatly impede success in future trials.

Sexual behaviours of HIV-seropositive men and women following release from prison.

Twenty-five percent of the US HIV-infected population is released from a prison or jail each year. As the extent of risky sexual behaviours after prison release is largely unknown, we interviewed a cohort (n = 64) of HIV-infected, recently released (mean 45 days, SD 28) prisoners about their current sexual risk behaviours. Almost half (47%, n = 64) of the released prisoners reported sexual activity after release, mostly with regular partners. Although 26% (n = 27) reported engaging in unprotected sexual activity with their regular partners, none (n = 4) reported unprotected sex with their non-regular partners. Furthermore, 33% percent (n = 15) of the releasees with regular partners reported engaging in unprotected sex with HIV-seronegative partners. These results suggest that regular partners of HIV-infected prison releasees are at risk of acquiring HIV infection, and secondary risk-reduction strategies are needed for HIV-infected prison releasees.

Nasal Airway Dysfunction in Children with Cleft Lip and Cleft Palate: Results of a Cross-Sectional Population-Based Study, with Anatomical and Surgical Considerations.

BACKGROUND: The aesthetic aspects of the cleft lip nasal deformity have been appreciated for over a century, but the functional implications have remained largely underappreciated or misunderstood. This study describes the frequency and severity of nasal obstructive symptoms among children with cleft lip and/or cleft palate, addressing the hypotheses that age, cleft type, and severity are associated with the development of nasal obstructive symptoms. METHODS: Children with nonsyndromic cleft lip and/or cleft palate and a comparison group of unaffected children born from 1997 to 2003 were identified through the North Carolina Birth Defects Monitoring Program and birth certificates. Nasal airway obstruction was measured using the validated Nasal Obstruction Symptom Evaluation scale. RESULTS: The survey was completed by parental proxy for 176 children with cleft lip and/or cleft palate and 333 unaffected children. Nasal obstructive symptoms were more frequently reported in cleft lip with cleft palate compared with unaffected children (p < 0.0001); children who had isolated cleft lip with or without alveolus and isolated cleft palate were not statistically different from unaffected children. Patients with unilateral cleft lip with cleft palate were found to be more severely affected than bilateral cases. Nasal obstruction was observed in early childhood, although severity worsened in adolescence. CONCLUSIONS: This population-based study reports a high prevalence of nasal obstructive symptoms in children with cleft lip and/or cleft palate based on type and severity of the cleft. The authors encourage cleft teams to consider using this or similar screening methods to identify which children may benefit from functional rhinoplasty. CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, I.