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Pediatric to Adult Care Transition

Pediatric to adult care transition, also called health care transition or HCT, was the planned movement from a child- and family-centered model of health care to an adult- and patient-centered model. It included preparation, transfer when a new clinician or system was needed, and integration into adult care. A person could undergo HCT without changing clinicians, and a transfer of records or one first appointment did not by itself complete the process.

Definition and Scope

Health care transition concerned how a young person, their supporters, and their clinical teams prepared for adult care. It was not a single birthday, graduation, or universal age-out date. Pediatric practices, specialty programs, insurers, and hospital systems set different age limits, and some clinicians continued caring for established patients into young adulthood. The timing of transfer therefore depended on the practice, the available adult clinicians, the young person’s health and preferences, and whether the receiving team could safely assume care.

Transition also did not mean that every young adult had to manage care without help. Its goal was an adult model that respected the person’s legal rights, communication, preferences, and decision-making role while preserving whatever assistance they chose or legally required.

Evidence and Measurement

The United States National Survey of Children’s Health measured whether adolescents received several elements of transition preparation, including time alone with a clinician when appropriate, active work toward health-management skills, and discussion of the eventual move to adult care. In the combined 2022–2023 survey, 21.8 percent of children and youth with special health care needs ages twelve through seventeen met the transition-services measure. The figure described preparation during adolescence; it did not measure every aspect of the eventual handoff or the quality of adult care after transfer.

Studies of structured HCT interventions reported improvements in such outcomes as continuity, care use, self-management, satisfaction, and some condition-specific measures. Programs varied considerably, however, and no single model removed shortages of accessible adult clinicians, insurance barriers, or the administrative work of coordinating multiple specialties.

Structured Transition Practice

Got Transition’s Six Core Elements translated guidance from the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians into a clinical workflow. The 2020 version organized transition into six connected elements:

  • a transition policy or guide, commonly introduced around ages twelve through fourteen;
  • tracking and monitoring, commonly beginning around ages fourteen through eighteen;
  • readiness assessment, commonly used and repeated around ages fourteen through eighteen;
  • a transition plan, medical summary, and emergency care plan, developed around ages fourteen through eighteen;
  • transfer to adult care, often occurring between eighteen and twenty-one; and
  • confirmation that the young adult had entered and continued in adult care, often followed through ages eighteen to twenty-three.

These age ranges were implementation guidance, not universal eligibility cutoffs or tests of whether a disabled person was sufficiently independent. Readiness assessment identified knowledge, access needs, and tasks that required support; it did not determine a person’s worthiness for adult care.

Transfer Planning and Continuity

A useful transfer package gave the receiving team a current, usable account of the person’s care rather than sending an undifferentiated chart alone. Depending on the person’s needs, it included:

  • diagnoses, baseline function, significant history, allergies, medications, and current specialists;
  • a plan of care and emergency plan, including seizure or respiratory protocols when applicable;
  • recent results, pending tests, active referrals, and the reason for each treatment;
  • communication methods, sensory and procedural access needs, and the best ways to recognize pain or a change from baseline;
  • mobility, positioning, transfer, feeding, respiratory, and other equipment or supply requirements;
  • insurance, pharmacy, home- and community-based service, and equipment-vendor information; and
  • decision-making and information-sharing documents when needed.

Direct communication between pediatric and adult clinicians, an overlap period, telehealth planning, or specialty consultation could reduce gaps. The receiving team still needed to confirm prescriptions, referrals, equipment orders, emergency plans, and follow-up rather than assuming that each item transferred automatically.

Legal adulthood changed the default rules for consent, privacy, and access to records, but it did not require clinicians to exclude family members or other supporters. A young adult could authorize information sharing and participation by trusted people. Other arrangements—including health care powers of attorney, supported decision-making agreements, or guardianship—depended on the person’s needs, choices, legal status, and state law.

Clinicians remained responsible for communicating with the patient. A nonspeaking person could use AAC, gestures, vocalizations, body language, a communication partner, or a combination of methods. A supporter could help interpret established communication without replacing direct address to the patient. In covered United States health programs, federal disability law also required effective communication and appropriate auxiliary aids and services when necessary.

Autonomy was not the same as performing every task alone. It could include making choices with support, directing another person to complete a task, consenting to a caregiver’s participation, or using a legally recognized representative while remaining present and addressed in the encounter.

Recurring Barriers

Transition gaps could arise when no adult clinician had the capacity, accessibility, or relevant experience to accept a patient; when pediatric and adult teams used incompatible records or referral processes; or when insurance, equipment, therapy, pharmacy, and home-service authorizations did not move together. Young adults with childhood-onset conditions could also encounter adult practices unfamiliar with their baseline function, communication, positioning, or emergency protocols.

The move out of school-based services could occur near the same period but was a separate transition governed by education and disability-service systems. Likewise, Medicaid eligibility, waiver services, private insurance, and equipment coverage followed different rules. None was automatically lost solely because pediatric medical care ended, although changes in age, eligibility category, provider enrollment, or documentation could create interruptions.

Accessible adult care included examination and transfer equipment rated for the person’s body, adequate appointment time, AAC and other communication access, sensory accommodations, and room for chosen or legally authorized supporters. Diagnostic overshadowing remained a risk when a new team attributed unfamiliar symptoms to an existing disability instead of learning the person’s baseline and investigating the change.

Historical and Policy Context

As more people with childhood-onset conditions lived into adulthood, the separation between pediatric and adult systems became increasingly visible. United States pediatric, family-medicine, and internal-medicine organizations issued joint transition guidance in 2002, expanded it through a 2011 clinical report, and updated it in 2018. Got Transition developed the Six Core Elements from that clinical work and released version 3.0 in 2020.

The guidance shifted transition away from an abrupt age-based handoff and toward preparation beginning in adolescence, a coordinated transfer package, and confirmation that adult care had actually begun. Persistent low rates of measured preparation and uneven adult-care capacity showed that professional guidance did not guarantee access in an individual community.

Documented Transition: Caleb Ross

Main article: Caleb Ross

Caleb Ross was a nonspeaking AAC user with Lennox-Gastaut syndrome, hypotonic cerebral palsy, respiratory support, and substantial mobility and daily-care needs. His adult size also required appropriately rated wheelchairs, transfer devices, bathroom equipment, and examination access.

When Caleb was twenty, before he and Jess met Jae Lee and the Lee family, his Portland pediatric neurologist told Jess that the department needed to begin transferring him to adult neurology and expected to discharge him from pediatrics by the end of the year. The clinic’s child-sized equipment and staff discomfort with handling his adult-sized body were part of the pressure. Jess challenged a transfer without an adult team that understood his conditions and communication; the neurologist agreed to make calls and write recommendations but could not change the department’s deadline. Jess left the appointment feeling cornered and determined not to let the handoff sever his safety net.

At twenty-one, before their March 2038 move, Jess and Caleb joined an early-morning remote consultation with Dr. Emily Chen, a transition coordinator at Johns Hopkins. They took the call from their Portland living-room couch with Caleb’s Mufasa plush beside him. Caleb was already tired and run-down. Dr. Chen asked Jess what his good and difficult days looked like, how he communicated, how pain and changes from baseline appeared, and what support made care work. The conversation centered Caleb’s daily reality rather than treating his chart as a sufficient introduction.

Dr. Chen then coordinated with Jess and the Portland teams before the relocation. Remote planning allowed records, prescriptions, equipment and supply needs, seizure protocols, and receiving adult services to be addressed before Jess and Caleb crossed the country; in-person appointments could be staged after arrival. The work formed the medical-continuity portion of the March 2038 move to Baltimore.

Systemic Issues Healthcare Systems Policy Issues Accessibility Caleb Ross