Tips for Helping Patients with Special Health Needs Move from Pediatric to Adult Care

For most young people, moving from the familiar care of their pediatrician to an adult care provider can be bittersweet. But for children with special health needs and their families, this change can create concern or anxiety.

For these young people, it’s important for both pediatric and adult care providers to work with the patients, parents, and other caregivers to plan the transition of care.

The importance of a formal transition plan

Having a formal transition plan helps address parental concerns before the child “ages up” to adult care. Planning also ensures any needed support services are set up in advance, and it creates the opportunity for the young person to develop the skills needed to manage his or her own health care.

Preparing for adulthood means patients must take responsibility for understanding their personal health histories. They must feel confident enough to advocate for themselves, follow treatment plans on their own, and make — and keep — their own appointments.

Usually, a patient’s transition from pediatrician to adult care provider happens between ages 18 and 21. But, for children with special health needs, planning should begin as early as age 12.

What to include in the plan

This important information should be part of any transition plan:

• Resources for community services (rehabilitation, vocational, and educational services)
• Baseline functional, neurologic, and cognitive status
• Emergency treatment plans and contacts
• Assessment of the child’s understanding of his/her condition and prognosis
• Annual readiness assessments

Benefits and advantages

Benefits of a transition plan include:

• Reduced medical complications
• Greater adherence to care plans
• Positive patient experience and greater self-reliance
• Lower cost of health care
• Positive health, educational, rehabilitation, and vocational planning

Also, a transition plan helps adult care providers:

• Prepare for the young adult’s health needs
• Identify the legal health decision maker
• Discuss care policies with the young adult or family, including HIPAA regulations and insurance
• Prevent omissions or redundancies in care

Lack of timely health care and follow-up can result in long-term complications for young special needs patients. So preparing well in advance for this care transition is essential.

Allow time, have patience

It’s important to remember that the transition from pediatric to adult care is a process. It will take time. It requires coordination and planning to ensure the maturing child’s best health and participation.

For children with highly complex medical issues, the transition to adult care may come at a later age. Some young adults may stay longer under the care of pediatricians who are most familiar with their individual needs. That’s because patients may have limited access to adult physicians who have the required knowledge of complex conditions originating in childhood.

For more information and support

For more information about transitioning young special needs patients to adult care, visit gottransition.org .

Sources:

• American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; American Society of Internal Medicine. A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs. Pediatrics. 2002;110(6 pt 2):1304–1306.
• DiAnni, Brooke; Eng, Laurence. Oct. 26, 2016. NEJM Catalyst. An Operational Standard for Transitioning Pediatric Patients to Adult Medicine. catalyst.nejm.org/operational-standard-pediatric-transition-adult Accessed: Sept. 5, 2018
• Sawicki, Gregory; Garvey, Katharine. June 21, 2017. AAP News & Journals Gateway. Preparation for Transition to Adult Care Among Medicaid-Insured Adolescents.