Definition and Goals

HCT is defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” The goals of HCT for young adults with and without SHCNs are to optimize their health and lifelong functioning by providing uninterrupted and high-quality health care. All adolescents and young adults should have a timely and individualized HCT plan, regardless of their health care needs status. For HCT to be effective, it should be regarded as a dynamic planning process involving a collaborative team (ie, patient, caregivers, physicians, dentists, social workers) and a series of organized steps, rather than a one-time isolated event. The planning and support for HCT should be initiated early and be part of the routine primary care for all adolescents. The initial discussion about HCT between a youth and their caregivers should be initiated when the child is 12 years of age, with the ultimate goal of finalizing the transition by 18 to 21 years of age. ^,

For individuals with SHCNs, developing an HCT might require a more extended transition plan than for those without SHCNs. An HCT for individuals with SHCNs may include, but is not limited to, an exchange of information between the pediatric and adult health care team about the patient’s complex medical needs, need for comanagement, special accommodations, intellectual and self-care competencies, referrals to subspecialties, as well as issues on guardianship, informed consent, changes in the medical and dental insurance, and ineligibility for services previously covered during childhood. Although HCT encourages young adults to take control of their own health and function as independently as possible, these expectations might not be fulfilled for patients with SHCNs, particularly for those whose cognitive and/or intellectual disabilities impair their ability for self-management and health promotion.

Guiding Principles

In order to achieve a successful HCT, it is important to consider the fundamental principles of transition that have been studied and are endorsed by national medical and dental organizations. For individuals with SHCNs, some of these overarching principles into adult health care include

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  “In whatever health care setting it is delivered, services need to be appropriate for both chronologic age and developmental attainment;

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  Adolescents and young adults with chronic conditions share many of the same health issues and concerns as their peers. Thus, transitional health programs should be prepared to address common concerns of young people, including growth and development, sexuality, mood and other mental health disorders, substance use, and other health-promoting and health-damaging behaviors;

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  Many adolescents with chronic conditions are at higher risk than peers for unnecessary dependency, developmental difficulties, and psychosocial delay. A successful transition to adult health care may help prevent this by enhancing autonomy, increasing a sense of personal responsibility, and facilitating self-reliance;

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  Transition programs should be flexible enough to meet the needs of a wide range of young people, health conditions, and circumstances. The actual transfer of care should be individualized to meet the specific needs of young people and their families;

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  HCT is most successful when there is a designated professional who, together with the patient and family, takes responsibility for the process. Each patient and family should have a coordinator and advocate who help to facilitate and streamline their transition experience.”

Other principles cited in the HCT literature that are pertinent not only for youth with SHCNs but also for those without medical and/or special needs include

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  Interdisciplinary shared responsibilities, care-coordination, and effective communication between the pediatric and adult health care teams;

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  Recognition that social determinants of health, cultural beliefs, transition readiness, presence of medical and/or dental homes, insurance coverage, gender, sexual orientation, race, as well as education and socioeconomic status have an influence on HCT;

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  Efforts to achieve health equity and eliminate health care disparities;

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  Recognition of patients’ individual needs, differences, and vulnerabilities;

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  Early discussion and implementation of a systematic HCT planning into adult health care;

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  When possible, emphasis on the importance of patients’ independence, self-management, autonomy, decision-making regarding their own health, as well as continuous use of health care;

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  When available, caregivers’ support and engagement from the beginning of the HCT process. ^{, , ,}

Barriers to Successful Transitions

Although the definition, goals, and principles proposed for HCT seem reasonable, there are several barriers preventing a successful transition. ^{, ,} While these barriers are encountered by healthy individuals, they present an even greater challenge for those with chronic diseases and SHCNs. ^{, ,} The medical literature on the HCT of patients with chronic diseases and SHCNs is more extensive than the dental literature; however, similar trends have been found in both fields.

Shortage of adult dental care providers

There is an overall consensus in the literature that a significant barrier to successful HCT for young adults with SHCNs is a shortage of general dentists who are willing and able to provide dental care for individuals with SHCNs. ^{, , , ,} A national survey revealed that only 10% of general dentists in the US reported seeing children with SHCNs either “very often” or “often.” Over 60% of the respondents selected “patient behavior” as the greatest barrier to their willingness to provide care for these children, and over 45% reported the level of the patient’s disability as a barrier to treating this population. In another national survey, pediatric dentists in both private practice and academics cited the availability of general dentists and specialists as the major barrier to HCT for adolescents with SHCNs. Lack of adequate training and insufficient exposure to treating individuals with SHCNs during dental school are among the many reasons general dentists reported for not feeling comfortable and capable treating this population. ^{, ,} Pediatric dentistry is considered an “age-defined specialty that provides both primary and comprehensive preventive and therapeutic oral health care for infants and children through adolescence, including those with SHCNs.” However, owing to a shortage of general dentists who accept adult patients with SHCNs, pediatric dentists are often called upon to provide care for these individuals because they are trained in behavior management and the care of those who are medically and developmentally compromised. On the one hand, general dentists do not feel adequately trained and qualified to manage the behavior and complex needs of patients with SHCNs. On the other hand, pediatric dentists do not feel adequately trained and qualified to provide the optimal adult care that patients with SHCNs may require, especially for dental procedures that fall outside the scope of their training.

Patient and caregiver characteristics

Results from the 2005 to 2006 national survey that addressed HCT planning for children with SHCNs showed significant disparities in race/ethnicity and socioeconomic status among the individuals with SHCNs who were surveyed. Adolescents who were Hispanic and non-Hispanic Black, living in non–English-speaking and low-income households, were less likely to achieve transition successfully. The same survey conducted in 2009 to 2010 revealed that adolescents (aged 12–17 years) whose special needs consistently affected their daily lives were half as likely to receive services for transitioning to an adult medical care system than those whose special needs did not affect their daily activities (25.5% vs 52.0%). The same pattern was observed for adolescents living in poverty when compared to those in the highest income households (25.4% vs 52.2%). A more recent national survey (2016–2017) reported that fewer than 20% of adolescents diagnosed with behavioral, developmental, and/or mental disorders, particularly those with autism spectrum disorder, received appropriate and successful services to assist with transitioning to adult medical care. Non-English speakers are less likely to have discussions with clinicians about transition, use dental care, and achieve satisfactory HCT. Adolescents with SHCNs whose parents have low education levels also are known to face barriers to HCT. These studies ^{, , ,} identified a subset of vulnerable individuals with SHCNs who do not meet the requirements for HCT. Individuals with SHCNs who are least likely to receive HCT services are those from low-income and minority groups, who have low-educated parents, and who present with functional limitations and/or medical conditions associated with mental, behavioral, and/or developmental disorders. As a result, they do not secure needed medical and oral health care as they move into adulthood. Therefore, to ensure successful HCT, it is crucial to give priority to this population and provide the necessary support to help them and their families navigate the complex health system.

A study using data from 2 national surveys examined the association between having a medical care transition plan and dental care use during the transition from adolescence to adulthood. It also identified factors that influence dental care use for individuals with SHCNs, both with and without functional limitations; that is, ability to participate in daily activities. HCT was defined as a process for adolescents with SHCNs that included having a discussion with the primary care provider on “how health needs might change with age” and ever developing a transition plan. Results showed that having an HCT plan was a “key determinant of dental care use” only for individuals with SHCNs who did not present with any functional limitation. Regardless of the individual’s functional limitation status, a higher family income and adequate medical care insurance were the 2 factors consistently associated with a greater likelihood of dental care use. However, having an HCT plan in place is not enough to guarantee dental care use among individuals with SHCNs, especially for those with functional limitations. Financial limitations are problematic for adults with SHCNs because most are covered by public insurance programs, with little to no coverage for dental services. Without private insurance and/or the financial means necessary to pay for out-of-pocket dental expenses not covered by public insurance, the utilization of dental care within this population is potentially reduced. In addition, it is important to recognize that individuals with SHCNs have many other expensive health care needs that take priority over dental care.

An important obstacle to a successful HCT is the difficulty of breaking the bond and long-lasting relationship with a pediatric health care provider. ^{, , ,} Patients and their families perceive that pediatric providers know their needs well, are more patient- than dental-focused, and have a more welcoming and cheerful clinic atmosphere. Negative beliefs about adult health care include, but are not limited to, the idea that adult providers do not listen to or value caregivers’ knowledge about their adolescents’ SHCNs. In addition, there is a fear of the unknown when transitioning to a new adult care system, with patients and caregivers anticipating differences between pediatric and adult therapy recommendations. Caregivers of and patients with more complex medical and developmental needs are reported to not mind continued care by pediatric dentists into adulthood, whereas more independent and self-sufficient adolescents report feeling “out of place or infantilized” in a pediatric setting and are more likely to welcome the transition to an adult dentist. Caregivers of Medicaid-enrolled adolescents with SHCNs cite difficulties in finding general dentists who accept public insurance programs and changes in insurance benefits, from childhood to adulthood, as reasons to continue care at their “home” pediatric dentist office.

Many adolescents with SHCNs expect the transition into the adult care system to be supported and facilitated by their families, medical, and/or dental teams. Those with unstable living conditions who lack the support of a caregiver, family, or group home system are at increased risk of not only failing to transition but also not having appropriate access to medical and dental care. ^, Although pediatric dentists are reported to help their adolescent patients with and without SHCNs transition into the adult care system, there is still a lack of general dentists and specialists who accept patients with SHCNs with behavioral and complex needs, as well as those with public insurance programs. Moreover, there is a lack of readiness on the part of patients and caregivers to make the transition. These factors contribute to some patients with SHCNs over the age of 21 years continuing to rely on pediatric dentists for their dental care.

Providers’ characteristics

An important consideration that prevents pediatric dentists from transitioning adolescent patients with SHCNs into adult care is that most of these patients are covered by public dental insurance, which is often not accepted by many general dentists due to low reimbursement rates. ^, When pediatric and general dentists were interviewed about the transition for adolescents with SHCNs, most agreed that the transition would facilitate continuity of care and establishing a stable dental home for the patient. The most common barriers for a successful transition, reported by both pediatric and general dentists, were a shortage of qualified general dentists who are “comfortable, experienced, and willing” to provide dental care for individuals with SHCNs and low dental reimbursement by public insurance programs. These findings were consistent with those from other studies. ^{, , ,} As with dentists, pediatric and adult physicians report similar obstacles to HCT, with the greatest difficulty being the transition of patients with more complex medical needs. In addition, both medical and dental providers report other challenges, including lack of communication and coordination between providers, differences in styles between pediatric and adult practices, appropriate reimbursement, and availability of office staff to dedicate time and effort to help patients and their families with the transition process. ^{, , ,}

Models of Health Care Transitions

Although a policy on “Transitioning from a Pediatric-Centered to an Adult-Centered Dental Home for Individuals with Special Health Care Needs” was adopted by the American Academy of Pediatric Dentistry in 2011, a recent literature review demonstrates that there is minimal knowledge, evidence, and research to guide the transition from a pediatric to an adult dental care system for these patients.

The medical field is ahead of dentistry in terms of developing, implementing, and testing HCT models. After the release of a clinical report on HCT in 2011, developed in collaboration with the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians, a structured clinical approach, called “Six Core Elements of Health Care Transition,” was developed to assist pediatric, family, and internal medicine physicians transitioning patients with and without special needs to an adult-centered care system. An updated version of this approach was developed in 2020, after the original model was tested in different clinical settings (ie, rural, suburban, urban, and academic sites) and later reviewed by clinicians, nurses, social workers, family navigators, public health experts, patients, and caregivers. This transition approach is divided into 6 timely stages that initiate early in adolescence and continue into young adulthood: “(1) Policy/Guide (age 12–14 years): develop, discuss, and share transition and care policy-guide; (2) Tracking and Monitoring (age 14–18 years): track progress using a flow sheet registry; (3) Readiness (age 14–18 years): assess self-care skills and offer education on identified needs; (4) planning (age 14–18 years): develop HCT plan with medical summary; (5) Transfer of Care (age 18–21 years): transfer to adult-centered care and to an adult practice; and (6) Transition Completion (age 18–23 years): confirm completion and elicit consumer feedback.” Additional considerations for individuals with SHCNs are implemented in the “Six Core Elements of Health Care Transition” to address their specific needs. ^, These special considerations include, but are not limited to, assessment of the patient’s degree of independence, decision-making, and self-advocacy; care coordination and comanagement between primary care providers and specialists; and written action-oriented care plans, as well as plans to address issues related to family/caregiver support, informed consent, guardianship or power of attorney, and insurance coverage. ^,