1. Capitulo, Kathleen Leask PhD, RN, FAAN
  2. McCarthy, Colleen MS, RN, NP
  3. McKie-Addy, Cynthia MS, RN

Article Content


With current advances in pediatric medicine and high success rates in pediatric transplantation, more chronically ill adolescents are surviving into adulthood than ever before. Adolescents with complex medical conditions such as cystic fibrosis, congenital heart disease, intestinal transplantation, sickle cell disease, or diabetes require long-term care from a primary provider who can also coordinate numerous specialists. For these adolescents, transitioning from pediatrics into adult medicine is a process that has proven to be very challenging and time consuming. However, to be successful, transition must be a partnership with the patient, family, and multidisciplinary team.


The transition from pediatric care to adult care is often poorly organized. Even established transition programs do not always provide collaborative and coordinated services. Lack of communication between pediatric and adult systems is often a problem. Transition should be a process that occurs over time, not rushed or expeditious. A successful transition program must be structured to integrate care, insure continuity and coordination of care, and respond to the unique needs of patients, caregivers, and healthcare providers. Psychological and emotional well-being of these vulnerable young adults must be assessed long before they transition to adult care. Patient-centered expectations and goals should be identified and a collaborative plan of care and timeline established.


Transitioning to adult care promotes building autonomy, independence, and decision making. Until age 18, parents or guardians legally make all decisions. Usually these young people have spent much time in children's hospitals and pediatric-friendly clinics that provided comfort, security, and continuity. Although important and invaluable while they were younger, as the young adult matures they may outgrow care in a juvenile environment. Promoting independence and responsibility for one's own healthcare is important for psychosocial growth and development. Many adolescents with chronic conditions are at higher risk than peers for unnecessary dependency, developmental difficulties, and psychosocial delay. Successful transition to adult healthcare may help prevent this by enhancing autonomy, increasing a sense of personal responsibility, and facilitating self-reliance (Rosen et al., 2003).


In 2002, a consensus statement from the American Academy of Pediatrics (AAP), the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine described the importance of supporting and assisting transition of adolescents with special healthcare needs into adulthood. However, after more than a decade, implementation of programs to successfully transition chronically ill young adults to adult care in a well-organized successful manner has been poor (AAP et al., 2011).


In my opinion, primary care providers and children's hospital systems should use nurse practitioners to coordinate care for these medically complex young adults. Transition plans should be collaborative and begin early, focusing on providing connectivity and communication with the patient and family, pediatric and adult teams, and all multidisciplinary services. Structured transitions begin by the young adult meeting the new teams and building relationships with them, without suddenly ending lifelong relationships with the pediatric team members. Over time, we can prepare these medically complex patients for a safe transition to adult care to enable them to have autonomy and independence regarding their healthcare and quality of life.



American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians-American Society of Internal Medicine. (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110(6 Pt 2), 1304-1306.


American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group, Cooley, W. C., & Sagerman, P. J. (2011). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128(1), 182-200. doi:10.1542/peds.2011-0969


Rosen D. S., Blum R. W., Britto M., Sawyer S. M., Siegel D. M.Society for Adolescent Medicine (2003). Transition to adult health care for adolescents and young adults with chronic conditions: Position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 33(4), 309-311. doi:10.1016/S1054-139X(03)00208-8 [Context Link]



In the past, many children suffering from catastrophic diseases, such as cystic fibrosis, sickle cell, or diabetes, frequently did not survive into adulthood. Due to advances in science, medical protocols, and medication regimes, 90% of children with conditions that were previously fatal are now living into adulthood (Sawicki et al., 2011).


Numerous institutions have an iron clad rule regarding the age when children are transitioned to adult units of the hospital, which may not be in the best interest of the child, and in fact, may have a negative impact on their care. Developmental needs of these young adults are an important aspect that must be incorporated into the plan of care, established in partnership with the patient and family. To assess readiness of an adolescent for transition to adult care, an individual evaluation of their maturation and physical development is required. According to Sawicki et al. (2011), the young adult must be able to make healthcare decisions, manage their own healthcare, and advocate for themselves.


The environment and the psychosocial components of care are other crucial variables. Children and young adults who have frequent hospitalizations develop a strong bond with their nurses, physicians, child life specialists, social workers, and other caregivers. They become comfortable with the physical environment, which increases their sense of safety and security. Transition to adult services without regard to developmental versus chronological age can be detrimental, causing fear and sadness. Suris, Michaud, and Viner (2004) found that chronically ill children commonly have delayed growth, development, and puberty. This is more profound when illness includes chronic inflammation and malnutrition. Assessing readiness for transition to adult care is complex and must recognize the interrelatedness of physical, social, and psychological development and maturity.


According to Hilliard et al. (2014), young adults with diabetes showed that they value the trusting relationship with their pediatric team and were uncomfortable with the physical environment of adult care. They gave great importance to the work of the multidisciplinary team that was embedded into the experience of the pediatric unit as well as the family-focused approach to care. Several different models have been developed to address this unique population's needs. Grant and Pan (2011) developed the ON TRAC program at the Children's and Women's Hospital in British Columbia, Canada, geared toward meeting the needs of the youth and family by transitioning young adults after they exhibited readiness. Before transitioning, the teens had to exhibit self-advocacy, self-esteem, independent healthcare behaviors, and sexual identity, as well as have adequate social supports. Seattle Children's Hospital reported another successful program, meeting developmental needs of these patients by offering peer support, activities, and rooms that were age appropriate. Ability to continue peer support was essential as many of the teens had "grown up" together in the hospital, and had strong social relationships. Separation by transitioning to adult care, especially sudden separation, based only on a chronological age was detrimental to care. To optimize outcomes, medical care was developmentally appropriate, while still bridging pediatric and adult care.


Nurses need to advocate for our patients as necessary. Daily caretakers may be part of a small circle that understands the enormity of the teen's fears, including understanding the relationship of mind, body, and spirit. In my opinion, adolescents should not be transitioned to adult care routinely or based solely on chronological age. Adolescents' transitions to adult care should only occur when they are physically, mentally, and developmentally mature and are included in the timing and decision to transition.



Grant C., Pan J. (2011). A comparison of five transition programmes for youth with chronic illness in Canada. Child Care Health Development, 37(6), 815-820. doi:10.1111/j.1365-2214.2011.01322.x [Context Link]


Hilliard M. E., Perlus J. G., Clark L. M., Haynie D. L., Plotnick L. P., Guttmann-Bauman I., Iannotti R. J.(2014). Perspectives from before and after the pediatric to adult care transition: A mixed-methods study in type 1 diabetes. Diabetes Care, 37(2), 346-354. doi:10.2337/dc13-1346 [Context Link]


Sawicki G. S., Lukens-Bull K., Yin X., Demars N., Huang I. C., Livingood W. ...,, Wood D.(2011). Measuring the transition readiness of youth with special healthcare needs: Validation of the TRAQ-Transition Readiness Assessment Questionnaire. Journal of Pediatric Psychology, 36(2), 160-171. doi:10.1093/jpepsy/jsp128 [Context Link]


Suris J. C., Michaud P. A., Viner R. (2004). The adolescent with a chronic condition. Part I: Developmental issues. Archives of Diseases in Childhood, 89(10), 938-942. [Context Link]