Patient Presentation
A 19-year-old male came to clinic for his health supervision visit. He had no concerns but was traveling overseas for a college trip and needed a health care form filled out. He denied any high risk social activities, had recently seen a dentist and always wore a seat belt in a car. The past medical history was not contributory. The pertinent physical exam showed a healthy male without abnormalities.

The diagnosis of a healthy male was made. He had previously completed all of his adolescent health screening and was current with all of his immunizations. He did not need additional vaccinations for his travel. His pediatrician filled out his health form and brought up the idea of transitioning to an adult health care provider. “You are a healthy person and are doing pretty well to keep your body that way. You are making good decisions about alcohol, drugs and your sexual health. We’ve talked before, but I want you to think about where you might want to get your health care in the future. I’m not kicking you out of my practice, but this a good time to really think about what you want to do next year. I have a couple of adult doctors who really like working with young adults like yourself. I’ll write their names down on your going home papers. Next year when its time for your physical you can go and see one of them if you want. I’ll still be here if you want to see me too or if you need me before you change doctors, but you’ll need to transition to an adult doctor in the next couple of years.”

Discussion

Transitioning patients within or across health care facilities is a complex process. It is not a single step or point in time. For many patients the transition from pediatric to adult health care can be uncomplicated as patients and health care providers are ready for the transition and are seeking it. It should be a part of “developmental milestone” for adolescent visits. Asking adolescents about their future plans especially after high school or college often easily segues into this discussion easily. For other patients and families, there is anxiety and fear about the transition process. For youth with special health care needs (YSHCN) the process can be complicated.

It is estimated that ~18% of 12-18 year olds in the US are YSHCN. Of these, it is estimated that only 40% receive transitional services to adult health care, and delays in doing so result in > 400,000 of these individuals remaining in pediatric care. A 2013 national study of YSHCN defined a successful transition to adult health care as having a usual health care source or personal doctor or nurse, having a provider who provides adult care, had health insurance that met their needs, one preventive health care visit in the past 12 months, and had not delayed or foregone needed health care services in past 12 months, and the patient was satisfied with health care services. Patients were more likely to successfully transition if they were female, received all routine preventive childhood care, able to see the providers they needed, had insurance during childhood to get them the care they needed, had health care providers that listened carefully to them and their families, and had a mother with a college education.

The best time for the actual transition has not been identified, but studies suggest that starting discussions in early teens or at time of diagnosis is appropriate. For YSHCN who have intellectual disabilities, guardianship after the age of majority needs to be discussed early, so families can consider and execute the appropriate legal documents to ensure seemless legal decision making capability for their son/daughter. For all patients starting early, allow the patient to gradually develop self-advocacy and self-management skills with supervision by family and health care providers. Some studies prefer the actual transition to be based chronological age (mid-teen to early 20s) but others prefer maturity level. Most transitions occur in the high school to early 20s age group.

People involved have different perspectives about it. Patients are often vary worried about the transition, whether they will be accepted by adult health care providers, or will they have adequate or any insurance. They note the difference in the health care delivery environment.

Parents often find the transition even more challenging than their children. They worry about their son/daughters health, future, their own “losses” as their child becomes more independent, the pediatric health care provider is gone, and the adult health care provider is not including them in the same role they previously had in their child’s health. Parents were worried they will be labeled as “difficult” by the adult health care providers.

Pediatric health care providers may see adult health care providers as being uncaring and less supportive of the YSHCN. 40% of adult health care providers also feel uncomfortable taking care of YSHCN.

Adult health care providers may see pediatric providers as being overprotective and unwilling to relinquish care. One paper noted: “Paediatric health care providers sometimes ignore the growing independence of adolescents. In contrast, adult care providers encourage adolescent patients to take responsibility for their health even through this may lead to neglect of physical, psychological and social development. As a result [YSHCN] can feel lost in adult care services leading to lower rates of follow-up appointments, attendance and medical compliance.”

Learning Point

Major barriers to a successful transition to an adult health care provider for YSHCN includes:

• No planned or inadequate transition process
• Insufficient preparation of process or timing
• Lack of accessibility to adult health care services
• Negative attitudes of health care providers to the transition process
• Negative attitudes of patients to the transition process

Major facilitators to a successful transition include

• A structured, systematic transition process including
  • Understanding the patient and their personal and health care goals
  • Understanding the families’ goals for their son/daughter
  • Assessment of patient self-management skills (see personal responsibility below)
  • Identify key pediatric health care provider to guide the process
  • Referral to specific adult health care provider(s)
  • Going to/making an appointment with the adult health care provider before transitioning
  • Prepare structured summaries of past medical history and future plan of care
  • Identify legal issues including assent/consent, health care proxies, advanced directives, guardianship, HIPAA, FERPA, DNR orders, etc.
  • Plan health care insurance coverage
  • Prepare contact list and preferred communication methods for all adult health care providers
  • Prepare contact list for community services
  • Prepare emergency plan
• Gradual preparation for transition
  • Begin early in adolescence or at time of diagnosis to starting transition discussions
  • Discuss at timed visits or each visit
  • Consider legal needs and allow enough time to prepare legal documents
  • Plan health care insurance coverage
• Complex health care conditions
  • Availability of high quality adult health care providers who are knowledgeable about the specific diagnoses
  • Specific health care needs and services addressed comprehensively – including community services
  • Set up communication plan with patient, family, pediatric health care provider and adult health care provider during the transition process
• Parental support
  • Parents acting as a facilitator or guide aids transition
  • Too much oversight can hinder patient independence and self-efficacy
• Patients taking personal responsibility for their own care
  • Understanding the patient and their personal and health care goals
  • Consider work or education
  • Consider financial constraints
  • Consider cognitive ability, maturity, personal responsibility experience for medical management
    There are some questionnaires/tools that can help with discussions about medical management independence (e.g. Transition Readiness Assessment Questionnaire)

Questions for Further Discussion
1. What are some community resources that should be considered in transitioning YSHCN to adult services?
2. What government resources should be considered?
3. What is the role of social work in transitioning YSHCN?

Related Cases

Disease: Transitioning to Adult Health Services | Teen Health

Symptom/Presentation: Health Maintenance and Disease Prevention

Specialty: Adolescent Medicine | Social Services

Age: Teenager | Young Adult

To Learn More
To view pediatric review articles on this topic from the past year check PubMed.

Evidence-based medicine information on this topic can be found at SearchingPediatrics.com and the Cochrane Database of Systematic Reviews.
Information prescriptions for patients can be found at MedlinePlus for this topic: Teen Health

To view current news articles on this topic check Google News.

To view images related to this topic check Google Images.

To view videos related to this topic check YouTube Videos.

Oswald DP, Gilles DL, Cannady MS. Wenzel DB, Willis JH, Bodurtha JN. Youth with Special Health Care Needs: Transition to Adult Health Care Services. Matern Child Health J. 2013 Dec; 17(10): 1744-1752.

Zhou H, Roberts P, Dhaliwal S, Della P. Transitioning adolescent and young adults with chronic disease and/or disabilities from paediatric to adult care services – an integrative review. J Clin Nurs. 2016 Nov;25(21-22):3113-3130.

Feinstein R, Rabey C, Pilapil M. Evidence Supporting the Effectiveness of Transition Programs for Youth With Special Health Care Needs. Curr Probl Pediatr Adolesc Health Care. 2017 Aug;47(8):208-21.

Davidson LF, Doyle M, Silver EJ. Discussing Future Goals and Legal Aspects of Health Care: Essential Steps in TransitioningYouth to Adult-Oriented Care. Clin Pediatr (Phila). 2017 Sep;56(10):902-908.

Author
Donna M. D’Alessandro, MD
Professor of Pediatrics, University of Iowa