Oral Health Among Children and Youth With Special Health Care Needs

We analyzed data from the NSCH, an annual nationally representative survey of children and youth aged 0 to 17 years across the 50 US states and the District of Columbia.^24,25  The Maternal and Child Health Bureau, within the Health Resources and Services Administration, provides direction and funding for the survey, and the US Census Bureau conducts the survey. Survey respondents include parents or other caregivers (hereinafter referred to as “parents”) familiar with the child’s health and health care needs. For the current analysis, we combined 3 years of data (2016–2018),^26,27  excluding children <1 year of age. Overall response rates ranged from 37% to 43%, depending on the year; the interview completion rate (proportion of households with children who completed a questionnaire) ranged from 70% to 78%. We applied sampling weights to account for nonresponse and reduce the magnitude of bias^28–30  and conducted poststratification adjustment to ensure sociodemographic subgroups were appropriately represented in the estimates. Additional information regarding the survey’s methodology is available elsewhere.^31–33  Because the NSCH data are publicly available and deidentified, the study did not qualify as human subjects research and was not subject to review by an institutional review board.³⁴ 

The total analytic sample size was 98 711 children and youth ages 1–17 years, including 23 099 CYSHCN. We identified CYSHCN using responses to the CYSHCN Screener, a brief instrument that assesses 5 domains of qualifying health needs, operationalized as (1) functional limitations (alone or in combination with other qualifying needs); (2) prescription medication use; (3) elevated use or need of medical, mental health, or educational services; (4) use of specialized therapies, such as physical, occupational, or speech therapy; and (5) ongoing emotional, developmental, or behavioral conditions requiring treatment or counseling.³⁵  To qualify as CYSHCN, a child must experience at least 1 of the 5 domains, as a result of a health or medical condition with a duration of at least 12 months.

Oral health status measures were based on parent reports about their child’s current condition of teeth and past-year frequent or chronic decayed teeth and cavities, toothaches, and bleeding gums. Measures of POH care use in the past year were preventive dental visit, cleaning, instructions on tooth brushing and oral health care, fluoride treatment, and sealants (among those 6–17 years).

We selected several covariates on the basis of data availability and existing literature and organized them according to the Andersen framework.^36–45  Predisposing factors included age, sex, race and ethnicity, household education, household language, and urban or rural residence. Enabling factors included parent general health status, parent mental and emotional health status, family poverty status, current insurance status and type, and receipt of care within a medical home (composed of 5 care components: personal doctor or nurse, usual source of care when sick, family-centered care, ease of referrals, care coordination).⁴⁶  Need factors included total number of current conditions or disorders (out of a list of 26 chronic physical conditions and mental, emotional, or developmental disorders), type of special health care need, and overall condition of teeth.

We limited analyses to children and youth 1 to 17 years except for receipt of sealants, which was limited to those 6 to 17 years, consistent with clinical practice guidelines.^47,48  We conducted bivariate analyses to describe sample characteristics and obtain the prevalence of the oral health status and preventive service use, stratified by CYSHCN status. We also conducted bivariate analyses to examine the unadjusted prevalence rates of each POH service among CYSHCN, by the predisposing, enabling, and need factors, and then ran multivariable logistic regressions to assess the relationship between each preventive service and all independent variables. Model results are reported as adjusted prevalence rate ratios and 95% confidence intervals (CIs) comparing the effect of each independent variable on the relative prevalence of each outcome measure, controlling for all other independent variables.

We dropped observations with missing or unknown data from the analyses. Sex, race, ethnicity, and household poverty were imputed during weighted procedures. More information is available elsewhere about the imputation methods.^49–51  All analyses were weighted on the basis of the survey’s sampling design to produce estimates that were nationally representative. We used Stata SE version 15 (StataCorp, College Station, TX).

Approximately 20% of the children and youth 1 to 17 years were CYSHCN (Table 1). There were significant differences between CYSHCN and non-CYSHCN, with respect to age, sex, race and ethnicity, household language, parent general health and mental and emotional health, family poverty ratio, insurance status and type, and receipt of health care in a medical home (P < .0001 for all). Almost 48% of CYSHCN had 3 or more current conditions or disorders. Approximately 30% of CYSHCN qualified based solely on use of medications, 27% had both medication and service use, and 18% had service use only, with the remaining 26% having functional limitations.

CYSHCN were more likely than non-CYSHCN to have poor oral health (P < .0001 for all; Table 2). Specifically, the prevalence of teeth in fair or poor condition was twice as high among CYSHCN as non-CYSHCN (10% vs 4.5%), and CYSHCN had higher rates of decayed teeth and cavities (16% vs 11%), toothaches (6% vs 3.5%), and bleeding gums (4% vs 1.4%), compared with non-CYSHCN.

CYSHCN had higher rates of POH care use than non-CYSHCN (≤.0001 for all; Table 2). Eighty-four percent of CYSHCN had a past-year preventive dental visit, compared with 78% of non-CYSHCN. Although rates of the following specific preventive services were lower for both populations, compared with the prevalence of past-year visits, they were still higher among CYSHCN than non-CYSHCN: teeth cleanings (78% vs 70%), instructions on tooth brushing (50% vs 41%), fluoride treatments (53% vs 43%), and sealants (24% vs 21%).

Several predisposing, enabling, and need factors were significantly associated with POH care among CYSHCN (Table 3). Child age, race and ethnicity, household education, and primary language were consistently associated with receipt of specific POH services (although race and ethnicity was not associated with sealants). Parent general health was associated with all preventive services except fluoride treatment or sealants, whereas parental mental and emotional health was associated with preventive visits and cleaning. Moreover, family poverty ratio, child insurance status and type, and having a medical home were associated with receipt of all POH services except sealants. In addition, 3 of the 5 medical home care components (having a personal doctor or nurse, having a usual source of care when sick, and having family-centered care) were associated with receipt of POH services. Type of special health care need and condition of teeth were associated with all POH services except sealants. Number of conditions or disorders was associated with cleanings and fluoride treatment only.

After adjusting for all covariates, several factors remained significantly associated with receipt of POH care among CYSHCN (Table 4). CYSHCN in the youngest (1–5 years) and oldest (16–17 years) age categories had decreased prevalence of receipt of POH care, relative to those 12 to 15 years. In addition, CYSHCN from households with a high school education or less had decreased prevalence of preventive services, relative to CYSHCN from households with more education. CYSHCN from non-English households also had decreased prevalence of preventive services, compared with English-language households. Although few significant associations between race and ethnicity and receipt of POH services remained after adjustment, Hispanic CYSHCN had decreased prevalence of tooth brushing instruction and non-Hispanic Black CYSHCN had decreased prevalence of fluoride treatment, compared with non-Hispanic white CYSHCN. Fair or poor parental mental or emotional health (versus excellent or very good) was associated with increased prevalence of tooth brushing instructions and fluoride treatment; however, parent general health status was no longer associated with receipt of preventive services after accounting for covariates. In addition, there were few adjusted associations between family poverty ratio and receipt of preventive services, with the exception that CYSHCN <200% of the federal poverty level (FPL) had decreased prevalence of tooth brushing instructions, compared with CYSHCN ≥400% FPL. Lack of health insurance (versus private insurance) was associated with decreased prevalence of most POH services, whereas having (versus not having) a medical home was associated with increased prevalence of preventive services. There were no adjusted associations between type of special health care need and receipt of preventive services; however, CYSHSN with 2 or more conditions or disorders had increased prevalence of fluoride treatment, and CYSHCN with teeth in less than excellent or very good condition had decreased prevalence of preventive dental visits, cleanings, and fluoride treatment.

Our findings indicate that CYSHCN have higher rates of POH care use than non-CYSHCN despite having worse oral health status. CYSHCN’s poor oral health status may relate to their specific medical condition, poor understanding of oral hygiene practices, and poor manual dexterity, resulting in limited ability to perform self-care. Oral health treatments may be complex, requiring several appointments. In addition, because of their significant health needs, CYSHCN may have increased exposure to health care providers, leading to referrals for POH services.⁵²  In other words, the higher rates of oral health care use may be in response to CYSHCN’s worse oral health status yet remain insufficient to meet their needs. Ensuring appropriate use of POH services among CYSHCN is critical to the reduction of primary and permanent dentition caries, gingivitis, and periodontal disease.⁵³  Yet, children with chronic conditions may encounter more difficulty in finding dentists who are comfortable providing dental care.^5,9  Whereas 95% of pediatric dentists treat CYSHCN,⁵⁴  only 10% of general dentists do.⁵⁵  Few general dentists report regularly treating CYSHCN, having hands-on educational experiences with CYSHCN in dental school, or feeling equipped to manage patients’ unique needs,^55–57  highlighting the importance of dental workforce training that meets the needs of CYSHCN.⁵⁸ 

Overall, the associations identified in this study are consistent with previous work examining preventive dental care among CYSHCN.⁵⁹  As with the general child population,¹⁹  we found that the youngest CYSHCN were less likely to receive POH services. CYSHCN with parents with lower levels of education, and those from non-English households, were also less likely to receive POH services, as similarly reported among the general population.¹⁹  These findings highlight the importance of empowering parents by improving their oral health knowledge, providing referrals to dental care resources, and advocating for improved oral health care among CYSHCN.⁵⁸ 

Findings revealed that CYSHCN with a medical home were more likely to receive POH services. The National Standards for Systems of Care for Children and Youth with Special Health Care Needs recognizes that CYSHCN must have access to specialty services, facilitated through a medical home that coordinates care to meet medical, dental, and social-emotional needs.⁶⁰  We found that 1 in 6 CYSHCN did not have a preventive dental visit in the past year. Given ongoing efforts to improve the health care system to better serve the health care needs of CYSHCN,⁵²  this finding highlights missed opportunities to ensure all CYSHCN receive the necessary oral health care to prevent oral disease, such as integrating POH care (and dental coordinators) into medical homes.^61–63 

In addition, uninsured CYSHCN were less likely to receive POH services compared with their privately insured counterparts, but there were mixed findings regarding the impact of public insurance: publicly insured CYSHCN had decreased prevalence of tooth brushing instruction, increased prevalence of sealants, and no differences in preventive dental visits, cleanings, and fluoride, relative to privately insured CYSHCN. Previous research has revealed that publicly insured children (including CYSHCN) have similar levels of access to and use of dental care compared with those with private insurance, despite public insurance plans having better coverage for dental services.^64,65  Although Medicaid has always covered pediatric dental health services as an Early and Periodic Screening, Diagnostic, and Treatment benefit, long-standing concerns with low rates of use prompted federal recommendations and efforts to increase visit rates, including for POH services.⁶⁶  Expanding eligibility for Medicaid, however, is not sufficient to improve outcomes for CYSHCN.⁶⁷  Possible insurance-based strategies for further improving oral health care access include assuring that dental and oral health coverage meets the specific needs of CYSHCN, such as covering more complex or hospital-based procedures; improving reimbursement rates for oral health services; and creating innovative systems of care using the Medicaid waiver process (eg, dental clinics specializing in the care of CYSHCN).⁵⁸ 

The findings pertaining to sealants stand in contrast with other POH services examined. Specifically, we found no associations between sealants and race and ethnicity, family poverty ratio, or current insurance status or type. This may be explained by school-based dental sealant programs, which have targeted students in low socioeconomic areas, providing a cost-effective intervention to increase the prevalence of sealants and reduce caries among low-income children.^68–70  The majority of children, however, still lack sealants across all racial and ethnic, income, age, and disability status groups.^68,71 

There are several study limitations to consider. First, estimates are based on parent reports, which may be subject to recall or reporting bias. In particular, parents may not be aware of specific oral health services received by adolescents if they do not accompany them into the examination room during their visit, which may lead to underreporting. In contrast, parent-reported estimates are generally higher than those produced from claims-based data,^72–74  possibly because of a “telescoping effect” whereby parents recall distant events (such as a dental visit) as being more recent. No clinical validation studies have been conducted to assess the extent of bias in parental reports of oral health care; however, other national surveys that rely on self-report have been used to estimate oral health care use.^75,76  Parent-reported measures of oral health status are also subjective in nature, particularly the qualitative assessment of the child’s condition of teeth. Although this measure has not been previously validated, it has been used in the NSCH since 2003, and previous studies have found that it is associated with race and ethnicity,³⁶  insurance type,⁶⁵  socioeconomic status,³⁹  and special health care needs,⁷⁷  all in the expected directions. In addition, the results for fluoride treatment should be interpreted with caution. The American Dental Association generally recommends fluoride treatment of children at elevated risk for caries; however, it also advises professional judgment in assessing patients’ risk status when considering the net benefits of such treatment.⁷⁸  The NSCH did not allow us to ascertain characteristics of children (eg, access to fluoridated water, use of fluoridated toothpaste) that would indicate elevated risk. As a result, our estimates of the prevalence of fluoride treatment may underestimate the prevalence among children with an indicated need, because we included all children regardless of need in the denominator. Additional research is needed to study optimal fluoride strategies for special needs populations, including CYSHCN with specific health conditions. Finally, the NSCH only collects information about oral health services provided by dentists or other oral health care providers; services provided by primary care providers, such as pediatricians, are not captured by the survey. The US Preventive Services Task Force and the American Academy of Pediatrics’ Bright Futures Guidelines both recommend that primary care clinicians provide POH services to infants and children, including fluoride treatment and supplementation and oral hygiene education.^79,80  Future research is needed to examine the provision of oral health services provided to children, including CYSHCN, in primary care settings.

In this study, we highlight the importance of a comprehensive approach for ensuring access to POH services among CYSHCN. Such an approach should endeavor to adequately train oral health professionals; improve parents’ oral health knowledge and skills to prevent oral disease; establish a medical home that fully enables care coordination among medical, dental, and other social services; and provide adequate dental and oral health care coverage through public and private insurance.

CI

confidence interval

CYSHCN

Children and youth with special health care needs

FPL

Federal poverty level

NSCH

National Survey of Children’s Health

POH

preventive oral health