Transition to Adult Care

Transition to an adult care clinician is part of supporting a late adolescent’s developmental trajectory. Adult-oriented care considers the unique health risks of adulthood and the patient’s goals for educational attainment, career choices, and independent living.

Key Elements of Transition to Adult Care

These principles help to inform approaches to transitions at different stages. Care transitions can be conceptualized in terms of shifting medical decision-making from parent to child and from pediatrician to adult clinician.

Transition from parent to child: As children get older, they desire more autonomy. This independence should be fostered in a developmentally appropriate way. In adolescence, teenagers begin to assume adult roles and responsibilities with the goal of becoming independently functioning adults. Encouraging children to assume responsibility for their health and health care can help prepare them for the transition. Providing adolescent patients with private or one-on-one time with their primary care clinician can help foster autonomy and privacy as they become young adults.

• Action: Choose responsibilities that are appropriate for the child’s developmental stage:

  • A school-age child can explain what they do to keep healthy at a well visit or present symptoms they have at an acute visit.

  • A preteen or adolescent can keep a symptom diary.

  • A teen can take responsibility for his or her own medication(s).

Transition from pediatrician to adult clinician: When patients are starting to be interviewed independently during an encounter (around age 12 years), review the practice policy regarding transition. This is an opportunity to set the stage. Around age 14 to 15 years, prepare a written transition plan that is reviewed and updated at annual well visits. Around age 18 to 22 years, most pediatric patients graduate to adult clinician(s). The age will depend on educational and occupational pursuits (many young adults will stay with a pediatrician through college), special health care needs, and office policy. See an example of a health care transition planning algorithm in the American Academy of Pediatrics (AAP) Clinical Report—Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home.

Principles and Importance

Transition planning is considered an essential function of a pediatric patient-centered medical home. Transition planning should aim to be:

Continuous or uninterrupted: Young adults should have access to care in an uninterrupted fashion, especially during the transition from a pediatric to an adult care clinician. During the transition, patients are prone to falling between the cracks. Although some aspects of transitional care may be less pertinent to patients with medicine-pediatrics or family medicine clinicians, some facets of transition planning still apply.

• Action: Make sure prescription refills and acute care needs are provided until care with a new clinician is established.

Patient-centered: Care should be developmentally appropriate and directed to the unique developmental needs of young adults, including educational goals, career choices, and progress toward independent living. The unique needs of young adults with cognitive impairment or developmental delays may be a greater challenge in an adult medical home that is accustomed to patients with greater independence.

• Action: Make an individualized transition care plan with the patient and provide them with a copy.

Coordinated: People with increased health care needs who have multiple medical clinicians and community service clinicians need thorough coordination of care for the transition.

• Action: Call or send summary to new clinician.

Comprehensive: Consider the whole person and their changing needs (e.g., in a pediatric setting, the work of childhood is school and play; for typically developing adolescents and young adults, the focus is college, vocational training, or beginning employment). For young adults with developmental delays, school services may no longer be appropriate or available and the focus turns to vocational training or sheltered work experiences.

• Action: Familiarize new clinicians with a patient’s social context and needs.

Accessible: Young adults continue to need access to acute, chronic, and after-hours care. Where care is delivered, and which clinician assumes responsibility, may change during care transitions. It is important for a young adult to know whom to contact and how to do so.

• Action: Provide the patient with written instructions about whom to contact and for what concerns. Keep an updated problem list. Plan for gradual transition of each item over time.

The overarching goal of transition planning is to write an explicit plan for a warm handoff. More often than not, transition planning is not well executed. Barriers include the lack of a clinic policy regarding transition planning, insufficient time, no staff dedicated to support the process, and limited or no reimbursement for transition planning. An additional barrier for children with special health care needs is inadequate adult services to assume developmentally appropriate care.

Children with Special Health Care Needs

Thanks to expanding medical technologies and knowledge, more children with special health care needs (CSHCN) and medical complexity (CMC) are living into adulthood. But CSHCN have a greater need for effective care transitions given the complexity of their conditions. General frameworks for transition planning can be adapted for CSHCN. Some special circumstances for which there are more-tailored resources or considerations for transition planning include:

Cancer survival: Young adult survivors of childhood cancer have special considerations in their follow-up care, which extends into adulthood and throughout their lives. The health risks are unique depending on the type of cancer and the treatment regimen. Some young adults are at risk for recurrence; secondary cancers due to treatment; and complications involving neuroendocrine, cardiovascular, pulmonary, fertility, and other systems. For long-term follow-up of childhood cancer survivors, see the Children’s Oncology Group survivorship guidelines.

• Action: Provide young adults with a record of their treatment and a summary of long-term health risks, including suggested screenings.

Chronic diseases of childhood: Cystic fibrosis and sickle cell disease are examples of conditions that were once limited to childhood. With advances in medicine, early detection, and diligent care by patients, families, and multidisciplinary care teams, children with these conditions are seeking adult clinicians as they age out of pediatrics. When children are young, parents provide the daily care for children with chronic diseases. As children get older, they become responsible for aspects of their own care routine (e.g., administering their own insulin for diabetes, managing their own pain medication for sickle cell disease). By young adulthood, most patients should be wholly responsible for their care. The availability of adult care clinicians is a barrier to transition for adult survivors of chronic childhood diseases.

• Action: Help parents start to give responsibility to their children early for certain aspects of their child’s care and to add responsibilities over time with appropriate oversight.