November 24, 2020
The transition from pediatric to adult care
Healthcare transition is the process of moving from a pediatric to an adult model of healthcare. There are significant differences between adult and pediatric healthcare services, and this article sets out to explain the way in which a child with a systemic disease transitions from one to the other.
The prevalence of adolescents between 12 and 18 years with special healthcare needs is around 18%, double that of young children. Young people in this group have a number of conditions, including diabetes, asthma, juvenile arthritis, inflammatory bowel disease, cystic fibrosis, renal disease, and congenital heart disease.
These young people have unique physical, social and psychological challenges that can impact their development. Awareness of these challenges assists in planning the best way to support the transition, allowing the individual to manage their own health and effectively use health services.
Pediatric care is largely family-oriented and involves significant parental input and decision making. Conversely, adult care calls for autonomous independent decision-making. However, during the transition process, there must be collaboration between the young person, family, educators and health professionals, in order to develop an optimum transition plan centered on the individual needs of the youth with chronic illness.
The best time to transition from child-oriented to adult-oriented healthcare varies between patients but is often between 18 and 21 years of age, with the earliest steps of preparation beginning at 12 or 13 years. In this process, the role of pediatricians is especially important, as they have been in regular contact with the patient and their families.
A number of position statements have been released, emphasizing the importance of healthcare transition and outlining the necessary steps and timings.
In 2011 the American Academy of Pediatrics published a clinical report of expert opinion and consensus on practice-based implementation of transition. It was updated in 2018, and calls for a structured transition process based on the ‘Six Core Elements of Health Care Transition’.
These six stages are outlined by Got Transition, the federally funded national resource center on healthcare transition, and are available for use in a variety of primary and specialty care settings.
The 6 stages of quality transition care:
Transition policy - the practice develops a policy which is shared with providers, patients, and families to discuss and develop with the young person and their family. This preparation should begin in early adolescence, 12 to 13 years of age.
Use of a transition youth registry - this helps to monitor progress on the transition process. It can be used from 14 to 18 years of age, to regularly assess and document adolescents’ self-management skills, transition readiness, and disease knowledge. A sample transition registry is available on the Got Transition website.
Transition readiness assessment - this self-care skill assessment identifies gaps in knowledge, providing opportunities for education on self-management. It is suitable for ages 14 to 18. Again, a sample transition readiness assessment is available online.
Transition planning - this includes updating the plan of care and transition goals, as well as developing a portable medical summary and emergency care plan. It can be done from ages 14 to 18.
The transfer of care - this includes identifying and arranging transfer to an adult healthcare provider and preparation of a transfer package including the medical summary and transition readiness assessments. It usually takes place between ages 18 and 21.
Transfer completion - this entails communication with the adult team to ensure that the young person has been seen in the adult healthcare setting. It represents the final stage well, and will normally be complete by age 23.
Other tools and resources to support the transition from pediatric to adult care can be found online at the Got Transition website. These include a Coding and Reimbursement Tip Sheet, and videos and podcasts that may benefit young people and their families, and well as information for healthcare providers.
A successful, comprehensive transition of young people with special healthcare needs should include educational support, alongside healthcare transition planning, but the education and healthcare systems can approach transition very differently. Collaboration between the education and healthcare transition processes is necessary.
The educational needs of young people with long-term conditions are addressed in the Individuals with Disabilities Education Act (IDEA) 2004. Under IDEA, a Transition Individualized Education Program (IEP) must be in effect by a student’s 16 birthday.
The IEP is convened at least once a school year to plan state appropriate goals based on the student’s individual strengths, needs, and preferences. It focuses on improving the academic and functional achievement of the student, covering the services necessary for that student to thrive.
Once a student prepares to exit secondary school, a Summary of Performance is created to give useful information to postsecondary agencies about the student and their goals in employment, training or education.
The law covered in Section 504 of the Rehabilitation Act (1973) prohibits discrimination against persons with disabilities in any program or activity receiving federal funds. Under this law, students with a physical or mental impairment that “substantially limits one or more major life roles” will be given individualized 504 Plans.
The 504 Plan ensures that students have the necessary support and accommodations to have full access to education programs, and will be discussed during IEP meetings. For example, young people with cystic fibrosis need accommodations in order to learn effectively (e.g., permission to take enzymes, use restrooms, take nutritional supplements or help making up school missed due to pulmonary exacerbations).
Obstacles to an effective transition may include inadequate planning, poor service coordination, lack of resources, or gaps in training. These challenges may contribute to health-related consequences for the young person, including disengagement with healthcare, poor treatment adherence, increased hospitalization rates, or overall detrimental health outcomes.
But as the 2011 position statement from the American Academy of Pediatrics says, "A well-timed, well-planned, and well-executed transition from child- to adult-oriented healthcare enables youth to optimize their ability to assume adult roles and activities.”
Ideally the healthcare system, the education system, and the youth and their family work together to help the young person become well equipped to transition to adulthood with the level of understanding and confidence needed to manage their own health and integrate it into all aspects of their life.
About the Author
Jane Collingwood is a medical journalist with 17 years experience reporting on all areas of medical research for online and print publications. Jane has also worked on a range of medical studies funded by the UK National Health Service within the University of Bristol in the South West of England. Jane has an academic background in psychology and has authored books on stress management and respiratory infections. Currently she is combining journalism with a national coordinating role on the UK's largest surgical research trial.