The age and primary reason for the first dental visit in children with special health care needs (2024)

1 INTRODUCTION

Children with Special Health Care Needs (CSHCN) face many challenges with obtaining proper medical and dental care. The American Academy of Pediatric Dentistry (AAPD) defines a special health care need (SHCN) as any physical, developmental, mental, sensory, behavioral, cognitive, emotional impairment, or limiting condition. These conditions require medical management, health care intervention, and/or the use of specialized services or programs.¹ Children with special health care needs (CSHCN) can have conditions ranging from a behavioral issue such as autism spectrum disorder to systemic diseases, like cancer or developmental disorders such as cerebral palsy.

The concept of the dental home is derived from the medical home model where children receive access to comprehensive, accessible, coordinated, and family-centered care.^{2, 3} A dental home allows the dentist to provide preventive services such as routine cleanings and fluoride application, as well as anticipatory guidance regarding home oral hygiene, diet, non-nutritive habits, and trauma. The medical home and the dental home seek to provide continuity of care, specialist referrals, and preventive services as the patient develops from infancy to adolescence. Establishing a dental home develops a relationship between the patient, parent, and dentist that assists in managing the dental care of the patient. The AAPD recommends that a child have their first dental visit by the age of one or within 6 months after the eruption of their first primary tooth.² Pediatric primary care providers also play a vital role in recommending and encouraging families to seek out dental care as the relationship between the family and pediatrician is established early in life. It is imperative for CSHCN to establish a dental home early in order to promote a lifetime of good oral health due to the elevated caries risk of this population.⁴ Establishing a dental home in the first year of life allows for the provision of necessary preventive care, as well as education of caregivers about effective home oral hygiene habits with the goal of reducing restorative and emergency care in the future.

CSHCN are considered to be at a higher risk of developing oral health problems.^{3, 4} Oral health is an important component of overall health and well-being. Dental caries is the most prevalent disease of childhood and if left untreated can result in death in rare cases.⁵ Oral pain and disease can affect a person's ability to eat, sleep, focus, and perform daily tasks. CSHCN may have limitations in their ability to care for their oral health; in addition, may also have difficulty expressing discomfort or pain. Some CSHCN may depend on a caregiver for oral hygiene due to developmental and neuromuscular delays and may also be orally averse and unreceptive to brushing and flossing at home. Medications that are frequently taken to manage medical conditions can cause xerostomia, are high in sugar or, in the case of seizure medications, may cause gingival overgrowth.⁶ CSHCN, especially those with autism spectrum disorder, may have oral aversions or hypersensitivities to texture, color, and taste often limiting their diet.⁷ All of these factors contribute to CSHCN having a higher risk of developing oral disease and likely requiring dental care that is specialized and multidisciplinary.⁶ Oral health conditions and diseases that are commonly associated with CSHCN include calculus accumulation, which can lead to an increased risk of gingivitis and periodontal disease, enamel hypoplasia, dental caries, oral aversions and behavior problems, malocclusion, anomalies in tooth development and arch formation, bruxism and wear facets, fracture of teeth, and trauma.⁸ For individuals without SHCN, these conditions may be relatively manageable, but for CSHCN these oral diseases can have overwhelming and potentially devastating effects particularly with children who have compromised immunity or cardiac conditions.⁸

CSHCN face many challenges in receiving dental care and treatment. The five barriers that McIver describes for CSHCN include: (1) the primary medical system; (2) parents of the child; (3) the child; (4) the dentist; and (5) payment for care.⁹ The ability for a family to access and receive care also depends on insurance coverage, cost, geographical location, the severity or complexity of the SHCN, as well as the experience of the provider with caring for individuals with SHCN. The top three perceived barriers to dental care for families with CSHCN include cost, provider's willingness to treat, and the child's medical condition.¹⁰ Overall, CSHCN are limited in their access to adequate dental care due to barriers including geographical limitations, challenges with insurance and payment for dental care, behavior of the patient, and extent of their treatment needs.

Pediatric dental residency programs are a primary resource for CSHCN to receive dental care and provide a unique opportunity for residents to develop the skills to better treat and serve CSHCN.¹¹ In the United States, since 2006, the Commission on Dental Accreditation (CODA) requires that dental students must have the competency to assess the treatment needs of patients with special needs.¹² Although the CODA requirement has been implemented, newly graduated dentists have indicated that they have received inadequate and insufficient exposure to treating patients with SHCN.¹² Patients with SHCN are often more challenging to care for from a behavioral and medical perspective and often require additional time and resources to provide dental care.¹¹ Also, finding a general dentist willing to treat CSHCN and that accepts Medicaid insurance can be very challenging for families.¹³ With the increasing number of CSHCN, it is important that dental education place an emphasis on providing students with didactic and clinical experience in special care dentistry.

The purpose of this research study is to conduct a survey among caregivers of CSHCN and evaluate the age of their first dental visit and the primary reason for that visit. There have been several studies that have surveyed caregivers of healthy children finding that the majority of children did not have their first dental appointment by their first birthday. In a study conducted in India, only half of the patients surveyed (n=4543) had their first dental visit after the age of five.¹⁴ Studies in Poland,¹⁵ Brazil,¹⁶ and Saudi Arabia¹⁷ also revealed that the first dental visit ranged between the ages of three and six. The most common reason for the first dental visit among all of these studies was due to dental pain or dental caries.^14-18 These studies failed to include or distinguish whether having a SHCN influenced the timing and reason for the first dental visit. Hence the aim of this study was to examine the knowledge of caregivers of CSHCN in regard to their first dental visit through a questionnaire, taking into account the child's healthcare diagnosis and sociodemographic details.

2 METHODS

This was a cross-sectional study to determine the age and primary reason for the first dental visit for patients with SHCN. This study was granted exempt status from the Virginia Commonwealth University (VCU) Institutional Review Board (HM 20023973). The sample size was calculated as 75 participants based on a two-sided 95% confidence interval width of±8 to 11% on the prevalence of dental visit by age 3, assuming the rate of SHCN children having a dental visit by age 3 is between 25% and 50%. Study data was collected and managed using Research Electronic Data Capture (REDCap) tools hosted at VCU. REDCap is a secure, web-based software platform designed to support data capture for research studies.¹⁹ This survey was formulated by clinicians and given by the dental provider to the caregiver of a patient with a SHCN who presented for a new patient or 6 month recall examination where dental prophylaxis and 5% sodium fluoride varnish application was provided.

Caregivers who were the parent/legal guardian of patients with SHCN who presented to VCU Department of Pediatric Dentistry for a dental appointment were included in the study.The inclusion criteria were English speaking caregivers of a child with SHCN, a patient presenting for a new or recall exam with an interval period of at least 6 months, and an age ranging from 3 years with no upper age limitation. Caregivers who did not meet the inclusion criteria were excluded from the study. The survey was distributed by any of the first or second year pediatric dental residents that identified a patient who met the inclusion criteria. A total of 22 questions were asked in the survey, and the questions targeted caregiver's demographics, the patient's demographics, and the child's specific SHCN.

Responses were summarized using counts and percentages. Associations with the child's age at the first dental visit were assessed using chi-squared or Fisher's exact tests. Significance level was set at 0.05. SAS EG v.8.2 (SAS Institute, Cary, NC) and was used for all analyses. Recruitment occurred during a 6-month time frame to avoid recruiting the same subjects returning for their routine follow-up.

3 RESULTS

In total, 85 caregivers were approached out of which 75 participants were included in the survey. The majority reported an annual income of less than $50,000 (61%), working less than 40hours a week (70%), and did not receive higher than an associate degree (78%). Respondent demographics are provided in Table1. Demographics of the children represented by the responding caregivers are provided in Table2. Majority of the children were greater than 8 years old (80%) and lived at home (96%). Around 61% were male, and 53% reported diagnosis of autism spectrum disorder. Amongst the children surveyed in this study, 28% required use of a wheelchair or other mobility device.

Only 13% of caregivers reported that their child was less than 1 year old by the time of their first dental visit. Most presented for their first dental visit between the ages of one and three (68%). Nearly all reported seeing a pediatric dentist for their first visit (89%) and the primary reason was for a routine exam and cleaning (83%). Nearly half were self-referred (46%), but 36% reported being referred by their pediatrician or other specialist provider (10%). Summary of responses related to the child's first dental visit are provided in Table3.

A summary of potential barriers to dental treatment are provided in Table4. Just over a third of respondents reported having been to a dentist previously who was unable to treat their child due to their special health care needs (36%). These are referred to as “failed” dental visits for the remainder of the manuscript. When asked about potential barriers to having their child treated, 33% indicated their child's special health care needs, 15% indicated the parents’ working schedules, and 10% reported the lack of a dental office nearby. Almost half reported they have not experienced any barriers so far (47%). Eighty-nine percent of caregivers indicated they provide transportation for their child's dental visits, whereas 11% utilized group home or Medicaid transportation.

Whether or not a child was seen by a dentist by the age of three was significantly associated with the type of provider they saw for their first visit, such as a pediatric dentist (p=0.0046), whether or not they experienced a failed dental visit (p=0.0185), and their belief regarding when the first visit should be (p=0.0004) (Table5). Children who had their first dental visit by the age of three were most commonly treated by a pediatric dentist (89%) compared to 64% of those who didn't see the dentist until the age of three. Only 5% of patients seen before age three were treated by a general dentist compared to 29% of those seen at age three or older. When asked if they had been to a dentist and unable to receive treatment, 50% of children who were not seen before the age of three responded positively, in contrast to only 32% of those who were seen before the age of three. The other factor associated with the age at the first dental visit was the parent's belief about the age when the first visit should occur. For children seen by the age of three, 43% indicated by the age of one compared to 35% who responded when all the baby teeth were present. For children seen at age three and older, only 7% indicated by the age of one compared to 40% who indicated when all the primary teeth are present. Age at first dental visit was not significantly associated with the reason for the first dental visit (p=0.2804), the referring provider (p=0.5802), the parent's frequency of dental visits (p=0.5232), or the transportation method for dental visits (p=0.3585).

4 DISCUSSION

This study sought to investigate challenges related to Children with Special Health Care Needs (CSHCN) accessing dental care as well as the age and primary reason for the first dental visit. The majority of participants who participated in the survey reported a lower-income and lower level of education, but reported seeing their own dentist routinely every 6 months. All the participants in this survey were a parent/guardian of a CSHCN. Caregivers of children with autism spectrum disorder and intellectual disabilities made up most of the sample population. Overall, the findings of this research were positive regarding the first dental visit in CSHCN.

The majority of caregivers of CSHCN reported that the first dental visit for their child was for a routine cleaning and/or exam (83%). Beil et al compared the likelihood of children with and without SHCN, and found that there was no difference in dental care utilization or dental care expenditure between these two populations.²⁰ The frequency of utilization of preventive care services between children with and without SHCN has been recently investigated. Craig et al found that CSHCN are less likely to use preventive dental services.¹³ In contrast, Cleave et al found that rates of preventive dental visits were higher in CSHCN.²¹ Although it was encouraging that the majority of respondents in this study appear to be seeking out preventive dental care at an early age, more research is needed to determine if there is a difference in preventive dental care between children with and without SHCN and reasons for this difference.

This study was conducted in a pediatric hospital setting where many of the patients receive not only their dental care but also receive primary pediatric medical and specialty care. Therefore, a bias could exist toward a child being seen by a pediatric dentist. Patients seen in this setting may see the value in preventive care more so due to the coordination of the medical and dental team as well as the proximity of the dental clinic to other medical specialties. Similarly, children who have access to pediatric providers in a pediatric hospital setting may also be diagnosed at an earlier age with special health care conditions and may be referred by a pediatric specialist or self-referred to a pediatric dentist. This may explain the reason for 68% of the children included in the study are between the ages of 1–3 years. In addition to routine cleaning and exams, caregivers of CSHCN may be seeking guidance on home oral hygiene strategies. The results of this study showed that over half of caregivers reported that their child with SHCN brush two times per day (59%) and receive help with brushing their teeth (53%). As many CSHCN have limitations with dexterity and motor coordination, it is important for caregivers to engage in daily oral hygiene practices. Regardless, it has been found that CSCHN have a higher rate of oral health problems compared to children without SHCN.²²

Around 68% of caregivers in this study reported that their child's first dental visit was between the ages of one to three, while only a few reported the first dental visit was by the child's first birthday (13%). Although, the majority of children with SHCN had their first dental visit before the age of three, the AAPD recommends the first dental visit by the age of one.² Caregivers who took their child to the dentist by the age of three were more likely to see a pediatric dentist and close to half of the respondents answered correctly regarding the recommendation that the child should be seen by the age of one. This result was contradictory to the general belief that CSHCN would not attend a dental visit until they were older as well as that their caregivers would not be aware of the recommendation set forth by the AAPD. In our study, access to a pediatric dental facility in close proximity to other specialty providers serving CSHCN may have influenced the results.

Children with SHCN face many barriers surrounding their first dental visit, which include having working caregivers, length of the appointment, not being able to schedule an appointment within a reasonable time frame, cost of treatment, not having access to a dental office nearby, having a child who cannot cooperate, and/or having a child with a SHCN. About one-third of caregivers responded that a barrier to receiving dental care was that their child has SHCN, and about one-third of respondents said that they had previously been to a dentist who was unable to treat their child because of their SHCN. Dental appointments for CSHCN often require a private room, additional team members, and a longer period of time spent with the dentist. For many general dental practitioners, they may not have the staff or space to accommodate CSHCN. Due to these challenges, many pediatric dentists continue to provide care to CSHCN through adolescence and young adulthood.

This study presented several limitations including the sample size and language restriction. A total of 75 caregivers participated in the survey across 6 months of data collection. This study required that caregivers recall the age at when their child's first dental visit was and details surrounding that appointment, which might have resulted in recall bias. This study was conducted in a pediatric hospital setting where many of the patients receive not only their dental care but also receive primary pediatric medical and specialty care. Therefore, a bias could exist toward a child being seen by a pediatric dentist. Given these limitations, future research should include administering the survey only at the very first dental visit, translation of the survey to other languages, increasing the sample size, surveying caregivers of CSHCN who may not have a dental home, as well as conducting the study in a non-hospital based location.

5 CONCLUSION

Children with SHCN who have established a dental home at an early age appear to be more likely to see a pediatric dentist, understand the recommended guidelines, and are less likely to encounter a dentist that is unable to provide care due to a SHCN. While most caregivers in this study reported that they had not experienced any issues thus far, a significant number reported that a barrier to receiving dental care was having a child with a SHCN. Decreasing financial, geographical, and social barriers as well as providing a coordinated transition from the pediatric dentist to the adult dentist are critical factors for improving the oral health of CSHCN. Caregivers of CSHCN seem to follow the recommendation set forth by the AAPD.

CONFLICT OF INTEREST STATEMENT

There is no conflict of interest to disclose.