A child’s life at home

Children (both healthy and those with systemic illness) are more likely to have some form of medical insurance than dental coverage. While 6 million children lack medical insurance, 16.3 million lack dental coverage. Children with special health care needs are more likely to have access to a physician than they are to a dentist. When the NS-CHCSN was evaluated for unmet health care needs, it was determined that dental needs were second in frequency of need behind mental health needs. Dental needs were also the number one unmet health care need. It has been estimated that in some populations of CSHCN, as many as one child in seven lack dental insurance. The incorporation of oral health into the medical home, particularly for CSHCN, has been fraught with issues in training physicians and service-delivery concerns. This is especially true for facilities providing alternate living arrangements for patients with systemic illness.

Many such children, particularly those that are older, live in group facilities. In many cases, requirements for periodic oral health examinations are marginal and pursuance of actual dental care minimal, at best. While many case managers can identify the importance of dental care, to what extent they bear responsibility remains unclear. Even for those CSHCN who are deinstitutionalized, as is the growing trend, finding a local dentist to provide routine care poses a challenge.

One of the aims of the Dental Home concept relies on the recruitment of dentists to assume care for CSHCN into their practices. Progress has been slow. From a legislative standpoint, a key to improving access to dental care for this vulnerable population is understanding that incorporation into a medical and dental home is vital to overall health and a sustained quality of life.

My child, my patient

An increasingly common phenomenon is the assumption of some aspects of preventive medical care—typically those performed by nursing staff —by parents of CSHCN. Parents who assume a nursing role change the dynamic of their relationship with their child. This additional responsibility on the caregiver-parent-nurse can cause social isolation, greater anxiety, and stress in a marriage or relationship.

In a 2008 study of parents of children requiring complex medical care, MacDonald and Callery related one mother’s feelings as her daughter with a neurodevelopmental delay transitioned from infancy and toddler to school age:

I can’t imagine giving up caring for her, although I’m sure a time will come as she gets older, I mean she’s a lot heavier now, she’s quite a big girl, she weighs about eight stone and I do find that moving around, even changing a nappy, is getting more and more difficult. It’s not like lifting a baby’s legs up anymore. She’s heavy physically; she’s become more of a problem.

The above parent’s concern is emblematic of the dilemma that a child with systemic illness can place on a parent who also functions as a caregiver. There is no doubt in this mother’s words of her devotion to her child’s care, yet there is the reality that the child is getting heavier and living with a static condition that will likely not improve. This underscores the idea that, perhaps when anticipatory guidance is provided in a dental setting, it must be done as speaking to a caregiver who has cognition of how oral health can impact the child’s systemic disease, not simply to a parent who may find the thought of wrestling a large child to the ground to brush their teeth an insurmountable obstacle. Instructions and recommendations must be framed within the context of the child’s systemic condition.

My child, my patient

An increasingly common phenomenon is the assumption of some aspects of preventive medical care—typically those performed by nursing staff —by parents of CSHCN. Parents who assume a nursing role change the dynamic of their relationship with their child. This additional responsibility on the caregiver-parent-nurse can cause social isolation, greater anxiety, and stress in a marriage or relationship.

In a 2008 study of parents of children requiring complex medical care, MacDonald and Callery related one mother’s feelings as her daughter with a neurodevelopmental delay transitioned from infancy and toddler to school age:

I can’t imagine giving up caring for her, although I’m sure a time will come as she gets older, I mean she’s a lot heavier now, she’s quite a big girl, she weighs about eight stone and I do find that moving around, even changing a nappy, is getting more and more difficult. It’s not like lifting a baby’s legs up anymore. She’s heavy physically; she’s become more of a problem.

The above parent’s concern is emblematic of the dilemma that a child with systemic illness can place on a parent who also functions as a caregiver. There is no doubt in this mother’s words of her devotion to her child’s care, yet there is the reality that the child is getting heavier and living with a static condition that will likely not improve. This underscores the idea that, perhaps when anticipatory guidance is provided in a dental setting, it must be done as speaking to a caregiver who has cognition of how oral health can impact the child’s systemic disease, not simply to a parent who may find the thought of wrestling a large child to the ground to brush their teeth an insurmountable obstacle. Instructions and recommendations must be framed within the context of the child’s systemic condition.

Oral health and chronic physical illness

Children with chronic physical illness that limit movement or motor function face a daily obstacle in maintaining optimal oral health. The oral health burden in children goes far beyond caries. An emblematic example of a chronic physical illness is cerebral palsy (CP). CP is a relatively common (1 to 2 per 1,000 live births) static encephalopathy in which many of the challenges of oral health can be seen. Despite the reduction of neonatal and perinatal mortality rates, CP rates have continued to rise, and as a result more children are surviving with severe CP that would not have survived 20 years ago. Children with CP often present with poorly coordinated/pathologic oral reflexes. Dysfunctional swallow and chew mechanisms impact the diet that a child with CP can tolerate. Diet impacts plaque composition and the plaque composition impacts the balance of remineralization/demineralization that can lead to hard tissue dental disease. Children with CP have been shown to have significant food residue present on their teeth. Removal of this food residue can be a challenge to the patient and caregiver.

Another systemic illness that often presents with physical disability that impacts oral health is juvenile arthritis, including juvenile rheumatoid arthritis (JRA) and juvenille idiopathic arthritis (JIA). JIA represents the most common arthritis of childhood, has a reported prevalence of 1 in 1,000 births, and can result in significant orthopedic and psychologic morbidities. Children with upper limb JRA/JIA have been shown to have limited oral hygiene reach and poorer plaque removal. Children with JRA/JIA are often treated with low-dose chemotherapeutic agents, such as methotrexate, and our understanding on the long-term effect of these agents is limited. Methotrexate has been reported to have interactions with inflammatory cytokines, such as tumor necrosis factor. There is very limited understanding, if any, on how such interactions may affect oral development (eruption/exfolitation) and even response of pulpal and periradicular tissues to dental trauma.

Over time, the picture of caries prevalence in children with physical disabilities has changed. Historical studies demonstrated lower or equivalent decayed, missing or filled teeth or surface (DMFT/S) values in children with CP and those without. DosSantos and colleagues demonstrated children with CP were significantly more likely to be affected by caries than those without.

Caution must be exercised when interpreting how DMFT/DMFS relates the complete oral health picture of a child with systemic illness as CP and JIA/JRA. According to the World Health Organization, “DMFT and DMFS are means to numerically express the caries prevalence and are obtained by calculating the number of Decayed (D), Missing (M) and Filled (F) teeth (T) or surfaces (S). It is thus used to get an estimation illustrating how much the dentition until the day of examination has become affected by dental caries.” While DMFS and DMFT may give us the prevalence of caries, it represents a fragment of the overall oral health burden, as described in the opening section. In a 2008 study, Tickle and colleagues discussed surveillance methods used to assess the impact of dental pain on 3- to 6-year-old healthy children. The point is made that “person-level outcome measures are more important than tooth-level measures.” This speaks to the notion that our methods of assessing morbidity of the true impact of dental disease on a child are still in their infancy.