Oral Care Experiences and Challenges for Children with Down Syndrome: Reports from Caregivers

Abstract

Purpose:

The purpose of this study was to investigate the oral care experiences and challenges encountered by children with Down syndrome.

Methods:

Participants were 372 parents of children with Down syndrome 5–14 years of age. Parents completed a 48-item questionnaire designed by the authors to elicit information about oral care in the home and dental office. Descriptive statistics were used to examine oral care variables.

Results:

Parents reported difficulty across almost all oral care variables, including oral care in the home, oral care at the dentist, and access to oral care. Approximately one-third of parent respondents reported that toothbrushing was difficult and that brushing occurred 4 or less days a week. Over half of the respondents reported it was difficult to have a dental professional clean their child’s teeth, that uncooperative behaviors and sensory sensitivities increased in the office, and that those behaviors and sensitivities made care challenging. The majority of respondents reported having a dental home for their child, but that it was difficult locating their dentist, and that finances limited visits.

Conclusions:

This study suggests that children with Down syndrome experience difficulties and barriers to care in both the home and dental office settings.

Ensuring adequate oral health care is essential for physical and psychological well-being and is a global health priority.^1,2 Poor oral health and the diseases that may result can lead to difficulties with eating, speech, pain, sleep, school attendance, social acceptance and self-esteem, causing a dramatic effect on health and quality of life.^1,3–7 However, certain populations, such as children with special health care needs (CSHCN), are almost twice as likely to have unmet oral health care needs compared to peers without special needs⁸ and have an increased prevalence of dental disease.⁹

Children with Down syndrome (DS), a common chromosomal abnormality occurring in one in approximately 700 live births in the United States,¹⁰ are one such group of CSHCN at greater risk for poor oral health, characterized by greater severity and earlier onset of periodontal disease.^11–13 Factors which may contribute to these oral health challenges include differences in oral morphology, malocclusions, decreased salivary rates, cariogenic diets and medications, bruxism, and immunological factors.^11–15 Additionally, individuals with DS are reported to have poor oral hygiene,^12,16 and may also exhibit challenges cooperating during oral care which hinders the delivery of professional dental care.^17–20

Uncooperative behaviour during dental care coupled with comorbid medical conditions, poor oral health, and susceptibility for periodontal disease places individuals with DS at an increased risk for lifelong poor oral health outcomes such as tooth extraction and infections, as well as other expensive restorative work under general anesthesia that may present increased health risks due to comorbid conditions.^17,19,21,22 Additionally, surgery and dental treatment were the most common reasons for hospitalization of individuals with DS.²³

Although much is known about periodontitis as related to DS, minimal research has been conducted about the common barriers to preventive oral health care that are experienced by this population. As such, this study aims to investigate the oral care experiences and challenges encountered by children with DS using parental questionnaire data.

Methods

This study was approved for human subjects by the Institutional Review Boards of the University of Southern California (HS-15–00218) and Children’s Hospital Los Angeles (CHLA-15–00047).

Instruments

The Dental Care in Children Survey^24,25 was designed to elicit information from parents regarding their child’s experiences with oral care in the home and dental office. For this study, the survey was updated to include three DS-specific questions, three general oral-health questions, and five questions about families’ oral health practices and knowledge (a copy of the survey may be requested from the first author). The survey consisted of 48 items and included dichotomous yes/no answers, Likert-scale questions, and open-ended questions to obtain qualitative information. Survey questions inquired about: frequency of tooth-brushing, barriers to oral care, children’s responses to routine dental treatment, and use of restraint and/or pharmacological methods for routine dental treatment. Participant demographics (age, sex, race, ethnicity, communication level, and parent education) were also collected.

Procedures

Using convenience sampling, recruitment emails were sent throughout the United States to DS-specific organizations, private disability-specific schools, occupational therapy clinics, and Regional Centers, requesting that the organizations disseminate recruitment flyers and the online survey web address.

Data Analysis

Data were analysed using SPSS software v.25 (IBM Corp., Armonk, NY USA). For descriptive purposes, frequencies and percentages were calculated for each of the demographic and oral care variables.

Results

Of the 391 surveys completed, 372 were included in the analyses; 19 responses were excluded because respondents did not confirm that their child had a diagnosis of DS.

Participants

Participants were 372 parents of children 5–14 years of age with DS who responded to an online survey. Children with DS had a mean age of 8.7 years, were predominantly male (66%), and Caucasian/white (78%), and approximately half the sample self-identified as Hispanic or Latino (see Table 1). Children primarily were reported to communicate using single words/phrases (38%) or sentences (33%). See Table 1.

Table 1.

Descriptive Characteristics of Survey Respondents

	Mean (SD)
Child Age	8.7 (2.04)
	n (%)
	(N=372)
Child Sex
Male	245 (65.9)
Female	127 (34.1)
Child Race*
White, Caucasian	290 (78.0)
Asian	13 (3.5)
Black or African American	50 (13.4)
American Indian or Alaska Native	18 (4.8)
Native American or other Pacific Islander	12 (3.2)
Child Hispanic Status
Not Hispanic, not Latino	187 (50.3)
Hispanic, Latino	184 (49.5)
Communication (My child is able to indicate his/her needs or wants using:__________)
Single words or phrases	141 (37.9)
Sentences	122 (32.8)
Pointing to pictures	54 (14.5)
Gestures	29 (7.8)
Screaming and/or yelling	20 (5.4)
My child is unable to communicate	4 (1.1)
Missing	2 (0.5)
Survey Respondent Relationship to Child
Mother	169 (45.4)
Father	202 (54.3)
Other Family Member	1 (0.3)
Maternal Education Level
Less than High School or GED	1 (0.3)
High School or GED	55 (14.8)
College	268 (72.0)
Graduate Degree or above	46 (12.4)
Missing	2 (0.5)
Paternal Education Level
Less than High School or GED	1 (0.3)
High School or GED	31 (8.3)
College	247 (66.4)
Graduate Degree or above	91 (24.5)
Missing	2 (0.5)
Child Dental Insurance Status
State Insurance	164 (44.1)
Private Insurance	95 (25.5)
Parent pays out-of-pocket	64 (17.2)
None	28 (7.5)
Missing	21 (5.6)

^*Percentages do not sum to 100% as participants could choose more than one answer.

Participant Oral Health

Approximately 50% of the parent respondents reported that their children had habits which may impact their child’s teeth, including: pica (50%; n=186), bruxism (58%; n=215), and pocketing food in their cheeks while eating (46%; n=171); approximately half of parents also stated that their child experienced temporal mandibular joint dysfunction or jaw pain (48%; n=179). Approximately 70% of children had either state or private dental insurance.

Children’s oral health was most commonly reported as good (57%; n=212) or poor (39%; n=146), with few parents endorsing that their child’s oral health was excellent (2%; n=9). Despite the majority of parents reporting good oral health, over 40% of parents also reported that their child had experienced three or more: primary teeth cavities (61%; n=227), permanent teeth cavities (54%; n=201), primary teeth pulled due to decay (52%; n=193), and/or permanent teeth pulled due to decay (52%; n=193). Parents also reported an average of 13 (±8) days of missed school or activities due to dental-related pain or discomfort, and 8% (n=28)stated that at some time their child had tooth decay that led to problems in eating or speaking.

Oral Care at Home

Parents reported that their children’s teeth were brushed an average of 11 (±5) times per week, with over 80% (n=300) of parents reporting that they provided some or complete physical assistance for toothbrushing. However, almost 50% of parents reported that children’s teeth were not brushed every day in a week, and almost 30% reporting brushing only 4 or fewer days per week. Over 60% (n=226) of parents reported that toothbrushing was difficult on a daily basis, with reasons being that their child disliked the feeling of the toothbrush in his/her mouth (39%; n=145), disliked the taste or texture of toothpaste (31%; n=114), gagged during toothbrushing (19%; n=71), or that their child’s gums bleed (7%; n=24).

Oral Care at the Dentist

Almost 60% (n=222) of parents agreed or strongly agreed that their child received high quality care from the dentist. However, 38% (n=140) of parents also reported that they believed that their child’s diagnosis made the care received at the dentist more challenging, and 64% (n=239) reported that their child would be uneasy or afraid if they had to go to the dentist tomorrow. Parents reported that dental practitioners used physical restraint sometimes (58%; n=215) or often (26%; n=96) for routine preventive dental visits. Fifty-one percent (n=190) of parents reported that general anesthesia, sedation, or other drugs had been used for routine preventive dental visits; reasons, provided by the practitioner to the parent, included the child’s extreme anxiety (71%), behavioral difficulties (51%), and/or an inability to cooperate with the dental provider (26%).

Almost 70% (n=256) of parents reported that their child’s anxiety or response to dental care discouraged them from taking their child to the dentist for regular check-ups. Likewise, based on their child’s reactions or behaviors at the dentist, over 80% (n=306) of parents believed that it was moderately-to-extremely difficult to have a dental professional clean their child’s teeth. Fifty percent (n=185) of parents agreed that their child’s uncooperative behaviors (e.g., refusing to open mouth, screaming) increased at the dentist, and 56% (n=209) of parents noted that their child’s sensory sensitivities (e.g., difficulty with bright lights, loud noises, instruments for cleaning, taste of products) were heightened at the dentist as well. Parents also strongly agreed that these uncooperative behaviors and sensory sensitivities made dental appointments challenging [77% (n=288) and 66% (n=246), respectively]. Specific to the sensory stimuli in the dental office, children with DS were reported to be afraid of, dislike, or complain about: dental instruments in their mouth (55%; n=204), loud sounds (49%; n=181), bright lights (40%; n=150), leaning back in the dental chair (31%; n=116), smells in the dental office (21%; n=77), and/or the taste of toothpaste or fluoride (12%; n=43).

Access

Almost 60% (n=215) of parents reported that their child with DS had a regular dental clinic for care; of those, 94% (n=202) reported that their child saw a specific dental provider in that clinic. Additionally, 35% (n=131) of parents stated that their dentist was specialized in working with children with DS or CSHCN. Approximately 50% (n=194) of parents reported that their child had two or more dental cleanings in previous the 12 months, while 44% (n=163) received only one. However, more than half (n=205) of parents reported that finances limited the number of times they took their child to the dentist per year, with parents with no insurance/paying out of pocket endorsing this challenge most frequently (70%), followed by parents of children with state insurance (66%), and private insurance (54%).

Despite the majority of children having a dental home, almost 80% (n=289) of parents also reported moderate-to-extreme difficulty locating a dentist willing to provide their child with care; parents of children with state insurance reported this problem most frequently (93%), compared to approximately 70% of parents with private insurance and those who paid out-of-pocket. Sixty-one percent (n=227) of parents reported that their child had been refused care by a dental provider. As reported by parents, reasons the dental practitioner provided for refusing services included: inadequate financial compensation (60%; n=137), no hospital or surgical privileges (52%; n=118), inadequate training to treat CSHCN (46%; n=104), cleanings take too long (39%; n=87); child’s behavior problems (30%; n=67), and not accepting the child’s health insurance (8%; n=19).

Discussion

Previous parental reports have been varied in their description of the oral health of their children with DS, with some reporting overall good oral health^15,26,27 while others reporting poor.^28,29 In our study, over half of our parent respondents considered their child with DS’s oral health as good. However, based on the number of reported cavities and teeth pulled due to decay, many children with DS in our study exhibited a history of poor oral health. For example, 95% of participants reported that their child had one or more cavities in their primary dentition, substantially more than the 52% of children 6–11 years described in the National Health and Nutrition Examination Survey (NHANES).³⁰ Likewise, 94% of our sample reported one or more cavities in their child with DS’ permanent dentition, compared to only 21% in NHANES.³⁰ Our increased report of cavities is especially of interest as research has been inconsistent as to the prevalence of caries in this population, with some results suggesting a decreased incidence of caries in individuals with DS.^31,32 Half of our sample self-identified as Hispanic or Latino which may explain some of the increased decay in our participants, as oral health care disparities including greater tooth decay have been reported in children from minority groups.^4,30

Our results also suggest that children with DS experience difficulties accessing professional oral care. Challenges finding a dentist willing and equipped to treat children with special health care needs is common.^4,24,33–36 According to the 2006 National Survey of CSHCN, children with DS reported the highest proportion of unmet dental care needs (17.4%), experiencing significantly greater challenges obtaining needed dental care as compared to other CSHCNs.³⁷ Interestingly, over half of our participants reported having a dental home for their child; however, in line with previous research, almost 80% of participants also reported challenges finding that care.

The reluctance some dental professionals exhibit in treating children with special care needs has partially been attributed to a lack of personal confidence in treating this population, due to inadequate training and knowledge. Practitioner education is a commonly reported barrier to dental care access for CSHCNs,^4,9,38,39 so it is not surprising that almost 50% of parents reported that practitioners cited inadequate training to treat children with special health care needs when refusing care to their child with DS. This challenge also exists outside North America, with over 70% of Belgium dentists reporting that they rarely treated children with DS and that they desired additional training,⁴⁰ and over 50% of respondent dentists in Brazil stating that they only ‘partly’ understand the needs and limitations of patients with DS.¹⁸ Contrary to the above studies, over 90% of 22 US and Canadian dental schools surveyed reported including educational material specifically addressing DS, autism spectrum disorder, mental impairments, and age-related disabilities.⁴¹

Financial concerns were another barrier reported by parents. More than half of our parent respondents reported that finances limited the number of times they take their child with DS to the dentist each year, despite having state or private insurance. Similarly, parents of children with special health care needs, including DS, have previously reported that dental care is too expensive, with 58% additionally stating that this cost ‘often or sometimes’ prevented them from taking the child to the dentist.³⁵ Likewise, cost was the most common reason parents reported when explaining why their child with a special healthcare need did not receive needed preventive dental care.^36,37

Comparing our sample of children with DS to the 2013–2016 NHANES data for children 3–15 years,⁴² parents reported similar toothbrushing frequency per day, with 61% of both groups reporting brushing two times in a day. However, despite this high endorsement of brushing frequency, our results also found that almost 50% of children did not brush their teeth every day in a given week; NHANES did not ask this question. Compared to another study which inquired about toothbrushing frequency per day and per week, our parent respondents reported a lower frequency of toothbrushing for their children with DS (mean 11 times per week), compared to typically developing children (mean 12.6 times per week), but more frequently than children with autism spectrum disorder (mean 10.5 times per week).²⁴ Interestingly, none of these clinical nor non-clinical groups reached the recommended twice daily brushing.⁴³ In addition to diminished toothbrushing frequency, children with DS experience hypotonic motor function,⁴⁴ which may lead to inadequate cleaning and thereby increase risk for poor oral health.

Behavioral challenges also have the potential to hinder oral care in the home¹⁹ and the delivery of professional oral care for this population.^18,19,26,35 Despite some literature suggesting that oral-related behavior management is not problematic in people with DS,^14,17 other studies have reported uncooperative behavior and the experience of stress during oral care at the dentist for children with DS,^18,19,26,35 both of which our findings support. Uncooperative behavior has the potential to lead to a number of oral care related consequences, including unmet oral health care needs, tooth loss, as well as the need for advanced behavioral guidance techniques.^19,26,45 Lastly, children with DS often have numerous other health-related concerns; therefore, despite the increased risk for oral health problems, oral care may not be regarded as a priority.^6,33,35 In summary, due to the multiple factors which may impede oral care for children with DS, it is important to develop interventions to improve care in the home and dental office.

Several limitations should be noted. Respondents came from a convenience sample of parents who completed an online survey and self-reported having a child with a DS diagnosis; as such, no diagnostic confirmation took place nor is it possible to calculate survey response rate. Additionally, although the “Dental Care in Children” survey has been utilized previously to examine oral care experiences for other clinical populations,^24,25,46,47 it is not a standardized tool; questions such as oral health history (e.g., caries, pulled teeth) required parent recall which may not be as accurate as dental records.

Conclusion

Based on this study’s results, the following conclusions can be made:

1. Over half of parents assert that their child with DS has good oral health, despite simultaneously reporting a higher than average number of cavities and pulled teeth due to decay in both primary and permanent dentition.

2. Parents of children with DS report challenges with home and professional oral care as well as finding and accessing dental professionals willing and able to treat their child.

3. These findings support the need for increased education and practical training for dentists in working with CSHCN, specifically DS, and for the development of interventions to improve care for this population, both in the home and dental office.

The authors declare that there are no conflicts of interest regarding the publication of this paper. All authors have made substantive contribution to this study and/or manuscript, and all have reviewed the final paper prior to its submission.