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.
All youth face challenges as they grow up, including:
People with chronic illnesses face greater challenges due to their medical needs, such as having to:
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.
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 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)
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.
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.
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.
Address typical adolescent behaviors such as sexual activity, substance use and risk-taking, and how these behaviors relate specifically to their medical condition.
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.
For additional resources and checklists, see our transition resources.
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.
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.
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.
