Assessing Caries Risk in Children With Special Needs

Clinicians should consider the following approaches when treating this patient population

This course was published in the March 2017 issue and expires March 2020. The author has no commercial conflicts of interest to disclose. This 2 credit hour self-study activity is electronically mediated.


After reading this course, the participant should be able to:

  1. Discuss factors and conditions that affect caries risk in children with special health care needs.
  2. Explain the role that ear, nose and throat, as well as gastrointestinal conditions, play in caries risk in this patient population.
  3. Identify preventive measures that can help mitigate caries risk in these patients.

Risk assessment is a key component in the prevention and treatment of dental caries.1 Multiple risk assessment tools are available for dental practitioners, and all automatically place children with special health care needs into moderate- or high-risk categories.2–4 The term “special health care needs” encompasses a broad range of diagnoses and is comprehensively defined by the American Academy of Pediatric Dentistry as individuals with “any physical, developmental, mental, sensory, behavioral, cognitive or emotional impairment or limiting condition that requires medical management, health care intervention, and/or use of specialized services or programs.”5 Intake forms and histories help providers identify patients with special health care needs. A “review of systems” is a structured way of cataloging a patient’s medical history by organ system, and may be helpful in examining conditions associated with increased caries risk (Table 1).

Not all children with special health care needs are at high risk of developing caries, and prevention programs should be tailored to individual risk factors. Attention to the patient’s need for a cariogenic diet, use of medications that may be dosed in sugary suspensions or cause xerostomia, inability to maintain optimal oral hygiene, decreased salivary buffering capacity, and other condition-specific caries risk factors can help providers identify successful prevention strategies. This review of systems highlights common special health care needs in children that may affect caries risk (Table 2).


Given their physical proximity to the oral cavity, conditions affecting the ear, nose and throat may significantly affect caries risk. Physical challenges for children with special health care needs — such as decreased nasal passages in individuals with craniosynostosis or stenotic ear canals in children with Down syndrome — may increase the chance of typical childhood infections, including sinusitis or otitis media. They can also exacerbate conditions such as obstructive sleep apnea.6

Sinusitis, transient or chronic obstruction of the nasal passages, and conditions such as cerebral palsy can produce mouth-breathing behaviors, which increase the risk of xerostomia. A study of children ages 3 to 5 found that those with parent-reported mouth-breathing behaviors had significantly more white spot lesions than children who were predominantly nasal breathers.7 Otitis media is common in young children and has been linked to enamel defects.8 It is believed these defects increase caries risk and are a result of early insult to sensitive ameloblasts during enamel formation. Population studies confirm that children with at least one treated episode of otitis media in the first year of life were at 29% greater risk of developing early childhood caries.6

Children who experience problems with muscle tone, such as those with muscular dystrophy or cerebral palsy, or with genetic conditions, such as Down syndrome or Prader-Willi syndrome, are at increased risk of obstructive sleep apnea.9 While obstructive sleep apnea can have significant consequences to a child’s quality of life and is a contraindication for having dental work performed with sedation, a 2015 study showed these patients had fewer caries, less plaque deposition and better gingival health than healthy controls.10


Children frequently experience acute respiratory diseases, but chronic respiratory conditions — such as asthma, cystic fibrosis, allergic rhinitis or bronchopulmonary dysplasia — may alter the caries risk management profile.11 Xerostomia is a common symptom and side effect of respiratory drug therapies that reduce buffering capacity and remineralization ability, leading to elevated caries risk.12 Many individuals with chronic respiratory conditions also experience severe gastroesophageal reflux disease (GERD), and the resulting acid regurgitation can erode tooth enamel.13

Characterized by airway inflammation and bronchioconstriction, asthma affects 9.3% of children in the United States.14 Treatment includes long-term use of medications, such as beta2-agonists (albuterol) or inhaled corticosteroids, which can reduce salivary flow and its protective effects.15 Increased severity of the disease and higher numbers of therapeutic medications are associated with increased caries prevalence.16 In comparison to healthy controls, children with asthma are reported to have higher caries prevalence, especially in the primary dentition.17–19

Cystic fibrosis is the most common lethal genetic disease in Caucasians.20 It is caused by a defect in the cystic fibrosis transmembrane regulator gene that results in thick mucus obstructions throughout the body, most notably in the lungs.21 Children with cystic fibrosis have a number of caries risk factors, including a high prevalence of enamel defects, increased GERD, frequent use of inhaled xerostomia-inducing medications, and frequent need for nutrient intake due to the thickened mucosal lining.19,22,23

Clinicians should monitor salivary flow for children with chronic respiratory conditions, and offer recommendations as appropriate. Most children with chronic respiratory conditions are poor candidates for dental treatment using in-office sedation, which makes caries prevention of utmost importance.19


Common pediatric chronic gastrointestinal conditions that have implications for caries risk include GERD and celiac disease. These are associated with high levels of acid erosion and enamel defects, which weaken the outer tooth layer, leaving it susceptible to caries lesions.13 In one study, children with celiac disease demonstrated a higher prevalence of enamel defects compared with matched healthy controls, and presence of enamel defects in both groups was positively associated with caries experience.24
The caries risk associated with other gastrointestinal conditions, such as liver disease, appears to be determined by individual dietary habits instead of the underlying illness. In a study of children with end-stage liver disease, only frequency of nighttime feeding — not disease severity — was positively associated with caries experience.25

Children with neurologic or sensory impairments that make feeding by mouth difficult or unsafe are often fed by tube. Although significant calculus accumulation is common in these patients, caries activity is usually low.26 Practitioners should inquire if tube-fed children take any “social tastes” by mouth, as frequent introductions of sugar-sweetened foods may increase the otherwise low caries risk of this population.


Advances in pediatric nephrology have resulted in increased survival for children with acquired or congenital renal disorders.27 Despite the need for a carbohydrate-rich, protein-sparing diet, children with chronic kidney disease have dramatically lower reported caries prevalence when compared to healthy controls.28 This is almost certainly due to an increased total body pH that results in increased salivary buffering capacity, which, in turn, promotes enamel remineralization.29

Metabolic and physiologic changes associated with chronic renal failure affect mineralization of developing teeth. Kidney disease results in hypocalcemia, low serum levels of vitamin D3, and raised levels of inorganic phosphate and parathyroid hormone that cause enamel hypoplasia in both the primary and permanent dentitions.30 While previously protected by high salivary pH, these individuals’ caries risk may change as a result of treatment. After a kidney transplant, the salivary composition returns to normal. The existing hypoplastic and pitted enamel easily harbors plaque that may increase caries risk in these now susceptible patients.29


Epilepsy, the most common nervous system disorder in children, affects 1% to 3% of the U.S. pediatric population. Reported caries prevalence in this cohort is high, and may be due to poor oral hygiene and frequent use of antiepileptic medications.31,32 Children with epilepsy often have concomitant intellectual and motor disabilities that make oral hygiene difficult. In one study, when compared to healthy controls children with epilepsy had significantly higher caries experience, brushed their teeth less often, and had worse self-rating of their oral health.32 In addition, common antiepileptic mediations, such as phenytoin, can cause gingival overgrowth that also makes oral hygiene challenging;33 although its etiology is poorly understood and likely multifactorial, optimal oral hygiene can reduce side effects.


Chronic musculoskeletal conditions — such as cerebral palsy, Duchene’s muscular dystrophy, scoliosis or juvenile idiopathic arthritis — may result in lifelong impaired mobility. This decrease in range of motion and dexterity often makes oral hygiene difficult, which can increase caries risk. Studies of individuals with Duchene’s muscular dystrophy and myotonic dystrophy Type 1 corroborate that decreasing muscle function is associated with increased plaque and calculus accumulation. Caries experience, however, has been variable in these populations.34,35 In addition to receiving assistance with self-care, the use of specialized toothbrushes that are easy to grasp or power toothbrushes is especially important because dental care under general anesthesia with inhaled anesthetics is contraindicated due to the increased risk for developing malignant hyperthermia — a potentially fatal complication.36

Studies show that caries experience is high in individuals with bone con­ditions, such as osteogenesis imperfecta, fibrous dysplasia or McCune-Albright syndrome.37 The underlying genetic cause of such conditions may also weaken tooth structure, predisposing the individual to high caries risk.


Disorders of the blood in children are characterized as:

  • Red cell (e.g., anemia, thalassemia or sickle cell disease)
  • White cell (e.g., chronic granulomatous disease, leukocyte adhesion deficiency, cyclic neutropenia or severe congenital neutropenia/Kostmann syndrome)
  • Failures of the bone marrow (e.g., leukemia, aplastic anemia, Fanconi anemia or congenital amegakaryocytic thrombocytopenia)
  • Bleeding disorders (e.g., hemophilia, von Willebrand disease or thrombocytopenia)
  • Autoimmune conditions (e.g., immune thrombocytopenia or Evans syndrome)

Acquired hematologic conditions, such as iron deficient anemia, have been associated with severe early childhood caries, but this is thought to result from malnutrition stemming from the poor dentition.38 Studies of individuals with genetic hematologic conditions, such as sickle cell disease or thalassemia, show that other known caries risk factors (including diet or oral hygiene) have more influence than the underlying disease condition.39–41 Moreover, a study of children with hemophilia showed they had lower caries experience than healthy controls, and multivariate modeling confirmed that hemophilia status was not a risk factor beyond other known caries risk determinants.42

Leukemia is the most common childhood cancer, and treatment — including chemotherapy, radiation and/or hematopoietic cell transplantation — can cause oral complications, such as xerostomia, mucositis or dysgeusia, that increase caries risk.43 Additionally, treatment causes immunosuppression, which can exacerbate otherwise benign oral infections into life-threatening complications. This resulting neutropenia contraindicates most nonpalliative dental procedures.44 Although survival rates for childhood cancers are increasing, an elevated risk for caries remains into adulthood. A study of childhood cancer survivors, for example, demonstrates higher caries experience than healthy controls years after remission.45 In addition, these subjects had a higher prevalence of dental anomalies associated with increased caries risk.45 Aggressive preventive measures, including optimal oral hygiene (when not in a neutropenia state), use of chemotherapeutics (such as chlorhexidine and fluorides), and coordination between medical and dental teams, are essential to mitigate caries risk in these patients.


Endocrine and resulting metabolic conditions in children include diabetes, metabolic disorders and dysfunctions of the thyroid gland. Although periodontitis as a complication of diabetes mellitus Type 1 has been studied extensively, the reported caries experience of these patients has been inconsistent.46–48 Increased risk factors include decreased salivary flow, poor oral hygiene and poor metabolic control, resulting in increased salivary glucose levels.49

“Inborn errors of metabolism” is a blanket term that encompasses conditions resulting from a missing or deficient enzyme needed for critical metabolic processes, such as the breakdown of ingested proteins. These include phenylketonuria, maple syrup urine disease, glycogen storage diseases, homocystinuria, galactosaemia and medium chain acyl CoA dehydrogenase deficiency, among others. Effective management of these conditions often requires adherence to a low-protein, high-carbohydrate (and thus cariogenic) diet.50 Reported caries experience in these populations has been variable, and most studies include a small number of children due to the rarity of these conditions.51 Other endocrine-related conditions, such as hypothyroidism, include enlarged tongue, malocclusion and delayed eruption of teeth, but do not appear to influence an individual’s caries risk.52


Children can experience psychiatric and mental health issues, including attention deficit hyperactivity disorder, autism spectrum disorder, anxiety, depression, bipolar disorder, schizophrenia or eating disorders. Some may have a dual diagnosis of an intellectual disability. In this diverse population, use of xerostomia-inducing medications, restrictive diets and challenging behaviors can increase caries risk. Pharmacologic treatment can includes antipsychotic and antidepressant medications, whose anticholinergic effects cause xerostomia.53 While this does not appear to be solely responsible for the increased caries experience of this population, it may synergistically influence other risk factors.54

Challenging behaviors can affect an individual’s caries risk. Oral aversions are common in children with autism, and are associated with increased plaque levels and caries experience.55 Intellectual disabilities may also limit comprehension of the importance of self-care, resulting in poor oral hygiene.


Children with special health care needs may be at increased risk for caries. Therapy can prove challenging, and aggressive preventive measures — such as frequent recall intervals and regular fluoride treatment — should be implemented. In addition to encouraging optimal oral hygiene, clinicians should address risk factors resulting from the unique characteristics of the individual’s underlying condition and treatment. Understanding these specific factors will help oral health professionals formulate and implement effective caries prevention strategies.



Heart disease and its treatment have significant impacts on oral health and caries risk. The etiologies of heart diseases are classified as acquired with varied bacterial factors (e.g., rheumatic heart disease or infective endocarditis), viral factors (e.g., viral myocarditis) or congenital factors.56 Congenital heart disease occurs in 10.8 out of every 1000 live births in the U.S. and includes structural abnormalities resulting in cyanosis, such as patent ductus arteriosis, atrial and ventricular septal defects, Tetrology of Fallot, coarctation of the aorta, and truncus arteriosis.57 Although it can occur in isolation, congenital heart disease can also be associated with a variety of genetic conditions, such as Down, Turner, 22q11.2 deletion (DiGeorge), Williams, Noonan or Kabuki syndromes.58

In comparison to healthy matched controls, several studies show higher caries prevalence in the primary dentition of children with heart disease.56,59–61 No differences in disease prevalence or severity were seen between children with acquired or congenital heart disease — however, those with congenital heart disease experienced significantly more delayed dental maturation compared to their chronologic age.56 Early caries prevention for this population is vital to the success of any surgical treatments; it also critical in avoiding potentially life-threatening infections, including bacterial endocarditis.

The high caries risk of children with heart disease may be related to their lower use of dental care, increased sugar intake for metabolic and medication needs, and physical manifestations of the disease. These patients can exhibit higher prevalence of untreated disease than healthy controls.62 Reasons for this lower use of dental care may include enduring long periods of hospitalization that preclude making appointments, and a reluctance by dentists to see children with complicated medical issues.56 In addition, cardiac providers, parents and other caregivers may lack adequate information on the importance of dental care in individuals with heart disease.56,59

Children with cardiac conditions have higher-than-normal metabolic needs and may need to eat more frequently to maintain acceptable energy levels.63 The high frequency of between-meal snacking can increase caries risk. In addition, children with cardiac conditions often rely on a polypharmacologic regimen that contains multiple medications dosed in sugary suspensions to mask their bitter taste. This suspension may coat the teeth for hours between toothbrushing, compounding the individual’s caries risk.64

As with other systemic conditions that cause metabolic disturbances affecting ameloblasts, children with heart disease are at increased risk for enamel defects and, thus, caries.61,62 Recommendations for children with heart disease include early and aggressive preventive dental treatment, such as home and in-office fluoride therapy, detailed oral hygiene instruction and dietary counseling. The dental team should work with local cardiac care providers to coordinate care and reinforce the unique needs of this population.


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From Decisions in Dentistry. March 2017;3(3):48–52.

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