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Lurie Children’s Home Specialties & ConditionsTransitioning to Adult Care About Chronic Illness Care Transitions

About Chronic Illness Care Transitions

About 90-95% of youth with chronic illnesses are surviving into adulthood, and many of these patients have increased hospitalizations, poorer outcomes and even increased mortality after transitioning to adult care. Structured programs can prepare youth for their future in school and work, social and community integration and adult healthcare. Chronic illness transitioning is the planned and purposeful movement of adolescents and young adults from child-centered to adult-centered care.

Youth Experience Poor Outcomes

All youth face challenges as they grow up, including:

  • Increased levels of independence
  • Social pressures regarding high-risk behaviors
  • Financially

People with chronic illnesses face greater challenges due to their medical needs, such as having to:

  • Learn to manage their condition independently
  • Learn to navigate the healthcare system
  • Learn to balance their medical condition with school or work; adult life skills; community integration; and their social and emotional well-being
  • Deal with the change in culture between pediatric and adult-centered care

Pediatric care provides family-centered, comprehensive services, generally in one location, and allows parents to control decisions. Adult care, on the other hand, provides individual, disease centered-care, and leaves the responsibility for multidisciplinary management to patients. Patients are independent in medical decision making. The difference in the two environments can create substantial challenges.

Best Practices

Care should be individualized and based on the patient’s strengths. No standard transition plan exists, however, some items are well agreed upon and should be addressed as part of any transition plan.

Introduce the Transition Concept

Introduce the transition concept to the patient and family in pre-adolescence and create a written transition plan by age 14. Address that transition is a process, not just the transfer of care.

Give a statement about the transition processes such as, “When you leave here, people will expect you to know your medications…” or “The adult doctors are not all in one place…”

Create a written transition plan (when and how knowledge, independence, adherence, behaviors will be addressed, when adult providers will be identified and met, when insurance and financial issues will be discussed) 

Help Patients & Families Understand Their Changing Roles

As teens take on more responsibility for their healthcare, both the patient and family change roles. Patients move from being a recipient of care, to participant, to manager. This involves movement of parent and provider from supervisor and decision maker to consultant. This should be encouraged at developmentally appropriate stages throughout the child’s growth.

  • Talk to the patient directly first, then get more information from parent if needed
  • At each visit, increase encouragement to have the patient talk by themselves
  • At a pre-chosen, developmentally appropriate visit, have the patient meet alone with the provider

See That Young Adults Learn the Skills They Need

A structured transition program should ensure that young adults learn the skills necessary to manage their own healthcare. This includes elements of knowledge, skills, behaviors, responsibility and adherence.

  • Use an age-appropriate transition checklist at various visits to mark progress
  • Create educational events for teens and families to learn more about transition, future planning and meet others with similar issues
  • Create a portable medical summary document that helps patients learn about their medical condition, along with having a document to take to emergency rooms and new providers

Address Social Functioning

A structured transition program should also address social functioning, including education, employment, living, community involvement, adult life skills and management of finances.

Use a multidisciplinary approach, with a comprehensive checklist that includes an action plan to take when red flags are found.

Discuss Typical Adolescent Behaviors

Address typical adolescent behaviors such as sexual activity, substance use and risk-taking, and how these behaviors relate specifically to their medical condition.

Help Patients Plan Ahead for Insurance

Work with patients to make sure they have a plan for insurance as an adult. Provide appropriate resources as needed to ensure that patients are able to access adult healthcare.

Introduce Patients to the Adult Care System

  • Hold a joint clinic where patient meets adult providers at pediatric institution
  • Tour of adult center before transfer of care
  • Discuss accessing adult emergency care system

Tips for Teen’s Parents

  • Give your teen increasing levels of responsibility within the house such as household chores and family activities
  • Give your teen increasing levels of responsibility in their health care such as calling for their own appointments, filling their own prescriptions and communicating with their provider at appointments
  • Teach your child about their disease and medications
  • Allow your child to perform their own health care tasks and help them out during stressful times
  • Discuss post high school plans with your teen in order to prepare for the transition
  • Encourage your teen to participate in psychical, social and leisurely activities
  • Speak with your teen’s medical providers about transition and future planning for your son or daughter

For additional resources and checklists, see our transition resources.

Literature

The search strategy included combination of one of the following terms: MeSH term “health transition” OR search term “health” AND “transition” OR “health transition.” AND one of the following: MeSH “Child” OR search term “children” OR MeSH “adolescent” OR “adolescent” OR “youth.”

The search totaled over 3,000 articles. The articles that were chosen discuss transition as a primary point. All subspecialties including mental health were considered. Also, many articles relating to independence and health insurance for adolescents were selected for the final database. Many articles relating primarily to adolescent care and other general adolescent issues and functioning and NOT transitioning were not selected. Areas that are likely lacking are “oncology” and “lifestyle.”

The results of this search were combined with an existing database previously created from people working on transition in the field. In addition articles were added from references of the most recent general transition articles.

The database will be updated using the search strategy above and any other articles that I come across. The database is accessible following the link below which will transfer you to a public NCBI collection. From there the list can be downloaded and converted to your reference manager.

View Dr. Shah’s collection, “Transition Literature Database”​ from NCBI.

Policy Statements

American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group, Cooley WC, Sagerman PJ.

Pediatrics. 2011 Jul;128(1):182-200. Epub 2011 Jun 27.

Data & Statistics

Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics. Feb 2009;123(2):417-423.

American Academy of Pediatrics. Survey: Transition Services Lacking for Teens with Special Needs. AAP News. Vol 30; 2009.

Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. Jan 2005;115(1):112-120.