Dental Care and Children with Special Health Care Needs: A Population-Based Perspective
This paper grew out of an American Academy of Pediatrics project reviewing progress in the area of children's oral health after the publication of Oral Health in America: A Report of the Surgeon General in 2000. It includes a summary of key advances in national dental care and oral health surveillance of Children with Special Health Care Needs (CSHCN), and presents more recent national data on dental care need among CSHCN. Prior to 2000, there existed no population-based studies describing the dental care utilization or needs among CSHCN residing in the United States. When Oral Health in America: a Report of the Surgeon General was published that year, it addressed oral health of disabled populations only briefly, in large part, according to the authors, because there were such limited data available. In April 2000, Newacheck and colleagues published a sentinel paper entitled, "Access to Health Care for Children with Special Health Care Needs," relying on data from the 1994-1995 National Health Interview Survey on Disability and representing the first time that dental care was described as the leading unmet health care need among US CSHCN.
Since the article by Newacheck and colleagues, other population-based studies have been published, furthering understanding of dental care needs and access of CSHCN. Key to expansion of research on this topic was the formal definition of CSHCN by the Maternal and Child Health Bureau as well as the development of a screening instrument that operationalized this definition: "Children who have special health care needs are those who have (or who are at risk for) a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally." This validated tool, called the Children with Special Health Care Needs screener, is intended to be broadly inclusive and non-condition specific, and dichotomously classifies children as having a Special Health Care Need or not. The CSHCN screener is now a component of several national surveys, including the Medical Expenditure Panel Survey administered by the US. Agency for Health Care Quality and Research, the National Survey of Children with Special Health Care Needs (NS-CSHCN), and the National Survey of Children's Health. The latter two are Maternal and Child Health Bureau-funded surveys conducted by the National Center for Health Statistics of the Centers for Disease Control and Prevention. The capability to uniformly define CSHCN and relate this to the dental care and oral health variables within these 3 nationally representative surveys has produced a respectable expansion in oral health research focused on US CSHCN in the last decade. Published dental-related findings from these surveys are summarized in Table 1.
The second iteration of the NS-CSHCN (2006) is the focus of this research. Some revisions since the 2001 NS-CSHCN were relevant to better understanding dental care needs of CSHCN. Specifically, in the 2006 version, it is now easier to identify specific subgroups with more unmet dental care need, to separate out preventive versus "other dental care" (eg, fillings and other restorative dental care), and to make comparisons between children with and without special health care needs. Without a nonspecial needs comparison group, it had previously been difficult to know whether disparities in dental care access were associated with a child's special need or with other factors that may disproportionately affect CSHCN.
This project had the following objectives: 1) to determine, from a population perspective, a more current prevalence of unmet dental care needs, including preventive and other dental care, among CSHCN and compare this with children without special health care needs; 2) within the constraints of cross-sectional data, to compare 2001 CSHCN findings to those of 5 years later; and 3) to identify factors associated with a greater odds of unmet dental care needs in CSHCN. The impact of condition severity was of particular interest, as well as whether poverty, which is known from previous work to be an independent risk factor for unmet dental care, mediated the effect of condition severity on unmet dental care need.
Discussion
In this study of the 2005 NS-CSHCN, about 9% of CSHCN who needed dental care were unable to obtain it compared with 5% of children without special needs. Although dental care remains the leading unmet health care need for CSHCN, 23% fewer CSHCN had unmet dental care needs compared with the 2001 survey (755 581 in 2001 vs 579 477 in 2005), even though more CSHCN were said to have needed preventive dental care in 2005-2006 (78% in 2001 vs 81% in 2005-2006). Nevertheless, there remains considerable disparity in ability to obtain needed dental care by degree of poverty and condition severity. With 13.4 times the adjusted odds of unmet dental care need for severely affected, poor/low-income CSHCN (relative to unaffected high-income children), we are far from the goal of ensuring that all children are able to obtain the dental care that they need. These results emphasize the importance of attending to the dental care needs of our nation's most vulnerable children. Similar to studies in all US children, having public insurance such as Medicaid or State Children's Health Insurance Program and one's race/ethnicity were not, in general, significantly associated with unmet dental care needs in CSHCN after adjusting for family income relative to FPL.
Separate questions about preventive and other dental care made it possible to characterize unmet need for specific category of dental care, something not previously reported. There was more unmet need for other dental care than for preventive dental care among CSHCN. Delivering preventive dental care to a CSHCN is very important; however, it is more straightforward than restorative care, which can be time-consuming and labor-intensive for dental professionals, particularly if the child is more severely affected. Restorative dental care is also more expensive, and more of the cost burden for such care is borne by families. This may help to explain why other dental care needs were less often met.
This research identified that CSHCN with certain diagnoses, including Down syndrome, other forms of mental retardation, cerebral palsy, and autism, encounter greater difficulty obtaining needed dental care, although what it is specifically about these diagnoses that interfere with dental care receipt remains unclear. It may be that these diagnoses merely represent more severely affected children. There were also significant differences in the proportion of CSHCN with unmet dental care need as condition severity worsened. Moreover, the association between condition severity and unmet dental care needs was mediated by income. This is the first time that a child's condition severity, whether considered alone or as a function of their income, has been independently related to unmet dental care need. Even having a family income at/above 400% FPL was not fully protective against unmet dental care needs for those most severely affected. Virtually no parent cited lack of availability of dentists specifically trained in the care of CSHCN as an obstacle to their child's receipt of dental care. It may be availability of hospital-based dental services, which are more likely to be required for severely affected children, as opposed to specifically trained dentists, that poses the greatest barrier to obtaining needed dental care in these parents' eyes. Additional research is needed to clarify the exact nature of barriers for severely affected CSHCN.
There are certain limitations to this research. Responses to survey questions are based on a parental report and are thus subject to bias. Additionally, of the many topics and questions considered for inclusion in national surveys, only a limited number are possible, and most are broadly focused, leaving remaining unanswered questions. Little is known about the specific factors that interfere with severely affected CSHCN obtaining dental care. Nevertheless, findings from these surveys provide the basis for research questions better answered in smaller scale studies. There are, however, some omissions to the NS-CSHCN that pose particular obstacles to studying dental care need among CSHCN and that deserve remedy -- specifically, the lack of any items related to dental insurance. In this research, medical insurance was used as a proxy for dental coverage. But since 2.5 times as many children are uninsured for dental relative to medical care, this is a suboptimal substitute. Finally, differences in unmet dental care need by condition severity demonstrate the shortcoming of considering all CSHCN as a single group. Such an approach does not allow for an adequate picture of the dental needs of certain subgroups. By including children with little or no impairment among CSHCN, we are diluting out the difficulty experienced by more severely affected children when they try to obtain dental care.
Conclusions and Recommendations
In this paper, we sought to describe what has been learned about dental care for US CSHCN since release of the Surgeon General's Report in 2000. Indeed, almost everything known about this subject was gleaned from studies of the last decade. Results are remarkably consistent between studies in describing relatively equal rates of preventive dental care use by children with and without special health care needs. However, researchers have also reported more unmet dental care need and worse oral health among CSHCN relative to their non-special health care need peers. Findings from the 2006 NS-CSHCN confirm the anecdotal impression that there is more unmet need for other dental care than for preventive dental care, and that condition severity is significantly associated with unmet dental care need. Furthermore, we found that poor and low-income children with more severe conditions have more than 13 times the adjusted odds for unmet dental care needs compared with high-income unaffected children. Children facing the "double disparity" of poverty and a severe chronic condition deserve special attention from clinicians and policy makers to alleviate such marked difficulty obtaining needed dental care. Regardless of income, at least 90% of severely affected CSHCN had a personal doctor or nurse, which reinforces the importance of including dental care as part of the comprehensive care coordinated by the medical home.
Despite advances in the understanding of dental care utilization and needs among CSHCN, a number of unanswered questions remain. Specifically, it remains unclear exactly what factors interfere with certain CSHCN obtaining needed dental care. It is possible that a system of specialized referral centers, that provided preventive and restorative dental care to severely affected CSHCN within a region may help to better address dental care need for these children. In such a model, general and pediatric dentists would continue to care for mildly and moderately affected CSHCN in or near their home communities. To my knowledge, no one has proposed such a system. However, the degree of disparity in unmet dental care needs for severely affected children, which was identified in this study, should provide the basis for additional research directed at better understanding modifiable barriers to dental care for these children.
Designing a system of care specifically for more severely affected CSHCN also would require objective data about the actual dental health of CSHCN, such as would be obtained from oral examination. Although there exists a mechanism, in the form of the ongoing National Health and Nutrition Examination Survey (NHANES), to measure national prevalence of oral disease, the accompanying NHANES questionnaire includes only a very limited number of items that could identify a child as having a special need (eg, special education use). We recommend inclusion of the CSHCN screener and condition severity items in the NHANES questionnaire, as well as an oversampling (to improve precision in the resulting nationally representative estimates) of severely affected CSHCN who receive dental examinations, as a part of NHANES.
The last 10 years have brought considerable gains in knowledge about dental care need and use among US CSHCN. These would not have been possible without efforts on the part of the Maternal and Child Health Bureau, Agency for Health Care Quality and Research, Centers for Disease Control and Prevention, and National Center for Health Statistics to develop and implement nationally representative surveys focused on or specifically inclusive of CSHCN. A number of questions about dental care for CSHCN remain, but we are now closer to the goal of better understanding the dental care needs of CSHCN and of developing systems of care to meet these needs.