Policy on Transitioning from a Pediatric to an Adult Dental Home for Individuals with Special Health Care Needs

Purpose

The American Academy of Pediatric Dentistry (AAPD) recognizes the importance of transitioning patients with special health care needs (SHCN) to an adult dental home as they reach the age of majority. Finding a dental home¹ to address their special circumstances while providing all aspects of oral care in a comprehensive, continuously accessible, coordinated, and family-centered manner may be a challenge. This policy addresses transition of young adult patients with SHCN and identifies barriers that may challenge delivery of oral health care to this population.

Methods

This policy was developed by the Council on Clinical Affairs, adopted in 20112 , and revised in 2016³ . This revision included electronic database and hand searches of dental and medical literature using the terms: special needs, disabled patients, handicapped patients, adolescent development, adolescent health, special health care needs AND health care transition, oral health; fields: all; limits: within the last 10 years, humans, English, birth through age 18, young adult: 19-24 years. Additionally, websites for the American Dental Association, American Medical Association, American Academy of Pediatric Dentistry, Agency for Healthcare Research and Quality, Special Care Dentistry Association, and International Association for Disability and Oral Health were reviewed. Expert opinions and best current practices were relied upon when clinical evidence was not available. 

Background

AAPD is aware of the challenges that patients with SHCN and their families encounter when seeking oral health care. Due to advances in diagnostic medicine, the prevalence of children with SHCN has increased.^4-6 With improvements in medical care, patients with SHCN are living longer and require continued medical and oral health care.⁷ In the United States (U.S.), there are 65 million people who are of transition age, and an estimated 25-35 percent of these young adults have one or more chronic conditions.⁸ Of the five million transition-age youth in the U.S. with special health care needs, only 17 percent received adequate transition planning from their health care providers.⁹

Transitions are part of normal, healthy development and occur across the life span. Health care transition for older adolescents with SHCN is a dynamic process that seeks to meet their individual needs. The goal is to maximize lifelong functioning and potential through uninterrupted provision of high-quality, developmentally-appropriate health care as the individual moves from adolescence into adulthood. The cornerstones of patient-centered health care are flexibility, responsiveness, continuity, comprehensiveness, and coordination.¹⁰

Transitioning patients with SHCN

Facilitating health care transition for patients with SHCN has received national attention from other organizations recognizing the need to support the process.^11-13 The medical community, specifically, and the broader health care community (including dentistry) have yet to ensure that young people with SHCN who are the most dependent on coordinated health care services are able to make the transition to the adult health care system and still receive the services that they need.^6,14,15 Adolescents who do not receive medical transitions are less likely to receive dental transitions.¹⁶ Additional factors associated with limited access to care during adulthood transitioning include living in poverty, being a minority, and the independence level of the individual with SHCN.^17-20 A proper handoff, including clear direct or indirect communication between providers, can reduce medical errors during the transition.¹⁴ The transition process should begin during early adolescence and continue until the transfer of care is complete.²¹ This transitioning period is potentially stressful for parents and adolescents or young adults with SHCN, and resources for acquiring adulthood health care are insufficient.^22-24

To improve health care transition for adolescents and young adults with chronic conditions, a policy statement was established by several medical organizations.¹⁷ The policy statement articulated six critical steps to ensuring the successful transition to adult-oriented care. They are:

1. "to ensure that all young people with special health care needs have a health care provider who takes specific responsibility for transition in the broader context of care coordination and health care planning.
2. to identify the core competencies required by health care providers to render developmentally appropriate health care and health care transition and ensure that the skills are taught to primary care providers and are an integral component of their certification requirements.
3. to develop a portable, accessible, medical summary to facilitate the smooth collaboration and transfer of care among and between health care professionals.
4. to develop an up-to-date detailed written transition plan, in collaboration with young people and their families.
5. to ensure that the same standards for primary and preventive health care are applied to young people with chronic conditions as to their peers.
6. to ensure that affordable, comprehensive, continuous health insurance is available to young people with chronic health conditions throughout adolescence and into adulthood.”¹³

Although these steps represent a medical perspective, they may be applied to oral health care as well.

Education and preparation of the minor patient and parent on the value of transitioning to a dentist who is knowledgeable in adult oral health needs are important. At a time agreed upon by the parent, patient, and pediatric dentist, the patient should be transitioned to a dentist knowledgeable and comfortable with managing the patient’s specific health care needs. In cases where this is not possible or desired, the dental home can remain with the pediatric dentist and referrals for specialized dental care should be recommended when needed.²⁵

Discussion about transition can begin early, although the transfer of care may not take place for many years.^5,21 Evidence supports initiating a transition plan between the ages of 14 and 16 years.²⁶ Anecdotal evidence suggests that transition planning may be happening even earlier.¹⁰

Barriers in transitioning patients with SHCN

The most common category of unmet health care for children with special needs is dentistry.²⁷ Only 10 percent of surveyed general dentists reported that they treat patients with SHCN often or very often, while 70 percent reported that they rarely or never treat patients with SHCN.²⁸ Pediatric dentists appear more likely to provide dental care for this population, with 99.5 percent of pediatric dentists reporting they care for patients with SHCN.²⁹

According to the 2017/2018 National Survey of Children with Special Care Needs, there are approximately 13.6 million children with SHCN under age 17 (representing 18.5 percent of U.S. children).³⁰ The U.S. has approximately 8,600 pediatric dentists (M. Alonso [alonsom@ada.org], email, May 24, 2021). The relatively small number and distribution of pediatric dentists mean that broader involvement by general dentists is necessary to address access to care issues, especially transition of patients with SHCN.³¹ When patients reach adulthood, their oral health care needs may go beyond the scope of the pediatric dentist’s expertise. Even if a patient is best served by maintaining a dental home with a pediatric dentist, he may require additional dental providers to manage some aspects of his oral health care. It may not be in the young adult’s best interest to be treated solely in a pediatric facility.³²

Oral health care for adults with special needs is often difficult to access because of a lack of trained providers.^5,31 A survey revealed that most pediatric dentists help patients with SHCN transition into adult care, but the principal barrier is the availability of general dentists and specialists willing to accept these patients.³³ A 2005 survey of senior dental students noted that the provision of oral health care to patients with special needs was among the top four topics in which they were least prepared.³⁴ This self-perceived lack of preparation of future dentists bodes poorly for effective transitioning of adult patients with SHCN. Improving training at the predoctoral and postdoctoral levels is needed to increase the general practitioner’s skills and comfort for treating patients with SHCN.^35,36

Addressing the manpower issue is of utmost importance. Training and instruction for health care providers can be obtained through postdoctoral educational courses. In the U.S., programs such as general practice residencies and advanced education in general dentistry provide opportunity for additional medical, behavior guidance, and restorative training needed to treat patients with SHCN. The Special Care Dentistry Association’s fellowship and diplomate programs and the Academy of General Dentistry’s mastership program also may provide opportunities to increase workforce competency.^36-39 In other countries (e.g., Australia, Brazil, the United Kingdom) where special care dentistry is a recognized academic discipline, a variety of postdoctoral education and clinical training programs, as well as organizations (e.g., International Association for Disability and Oral Health), seek to reduce inequities in oral health care.⁴⁰

Most patients with special needs can receive primary oral health care in traditional settings utilizing clinicians and support staff trained in accommodating these individuals. Others require treatment by clinicians with more advanced training in special facilities.³⁴ Some pediatric hospitals may enforce age restrictions that can create a barrier to care for patients who have reached the age of majority.²³ Hospitals frequently require that dentists eligible for medical staff membership be board certified, thus making it difficult for general dentists to obtain hospital privileges. While surgery centers abound, these may not be the preferred setting to treat medically compromised patients.

Young adults may be discontinued from their parents’ insurance, resulting in a financial barrier to care. Additional barriers to dental transition include low socioeconomic background and insufficient health insurance benefits.¹⁶ For patients with special needs, overall health care involves intensive and ongoing medical supervision and coordination between medical and dental care. The integration of dentistry within the medical care system presents a series of logistical challenges.⁴¹ Special programs or alternative care delivery arrangements (e.g., mobile dental programs, nursing homes, group home facilities) to complement the care provided through private practices to address access issues for patients with SHCN are lacking.⁴² The medical home⁴³ reflects recognition that care is best served by having a central point of contact for ongoing primary care and coordination of care when delivered by a multitude of health care providers and support service providers. The dental home1 closely parallels the essential elements of the medical home as they relate to dental care.⁴² Linkages between patients’ medical and dental homes, however, often are not established as formally as those among medical care providers, frequently resulting in inattention to dental services for patients with SHCN.¹⁶ Efforts to establish stronger relationships between medical and dental homes are an important endeavor.⁴⁴ The most efficient but least common arrangement of care for patients with SHCN is a single institution having providers from both disciplines (typically a hospital or regional care center).⁴¹ Transitioning may become less of an issue in these facilities; however, those with comprehensive dental clinics are limited in number and spread unevenly across the country. 

Policy statement

A coordinated transition from a pediatric to an adult dental home is critical for extending the level of oral health and health trajectory established during childhood. The AAPD encourages:

• expansion of the medical and dental home across the life-span of a patient, especially to enable successful transition of the adolescent with SHCN.
• partnerships with other organizations to prepare general dentists to accommodate and provide primary health care for these patients in the usual dental setting.
• development of special programs or alternative care delivery arrangements (e.g., mobile dental programs, nursing home, group home facilities) to complement the care provided through private practices to address issues for patients with SHCN.
• utilization of the six critical steps to maximize seamless health care transition for the adolescent dental patient with special needs. These steps provide a framework to organize and prepare the dentist, patient, and patient’s family for the transition process.
• provision of financial assistance for dental treatment for adults with SHCN by local, state, and federal programs.
• emphasis on the education of predoctoral dental students in treating patients with SHCN.