Transitioning the chronically ill child:THE ROLE OF EMERGING ADULTHOOD

Jonathan Garrison, MSN RN Pediatric Transplant Coordinator Cedars Sinai Medical Center

“patient lost to follow up”

Why transition matters

Transitioning chronically ill children

Prevalence 1960 – 1.8% 2010 – 8%

Kennedy et al. 2006; McPerrin et al. 2014

It is the responsibility of the individual health providers to provide

optimal transition

Young adults report reluctance to transition,

yet at the same time desiring more adult-

oriented care.

What’s at stake?

• Lost to follow up • Lost to transition • Disease-specific sequela • Gaps in insurance coverage • Death

Existing areas of focus for pediatric transition

Existing areas of focus for pediatric transition

Acquired brain injury Chronic illness Congenital heart disease Cystic fibrosis Diabetes – type I and II Gastroenterology General Pediatrics Heart Transplant Hematology HIV Hypertension Inflammatory bowel disease

Kidney disease Kidney Transplant Liver transplant Lupus Neurogenic bladder Nutritional support Obesity Osteogenesis imperfecta Pulmonology Rheumatology Sickle cell disease

CINHAL, Google Scholar, Pub Med

https://twitter.com/kevinfarzad/status/504687187745468416?lang=en

What is Emerging Adulthood?

https://www.newyorker.com/magazine/2010/05/24

Emerging Adulthood

• Not adolescents, yet not entirely adults • Changing demographics exacerbate emerging adulthood • Culturally constructed and not universal • Role-less role

Arnett, 2000; Arnett, 2007; Parsons, 1942

Jeffery Arnett

Theories of Emerging Adulthood

Erik Erikson Childhood and society, 1950 Identity: youth and crisis 1968

“psychosocial moratorium”

Erikson, 1968

Theories of Emerging Adulthood

Alicia Patterson, 2012Daniel Levinson, 1978Kenneth Keniston, 1971

“Tension between self and society” “Novice phase” “Incarnation vs Impudence

Graft loss during Emerging Adulthood

Foster, 2014

Graft loss during Emerging Adulthood

• High-risk age window that all must pass through. • Brain development is a perfect storm for adverse reactions. • Increased risk of graft failure with emerging adulthood, regardless

of age at transplant. • Adherence declines in adolescence, reaching it’s lowest point in

emerging adulthood, and then improves with age.

Foster, 2011; Foster, 2014

Creating a Transition Protocol

• Patient knowledge about transplant • Managing medications • Self-advocacy and autonomy • Insurance knowledge • Emotional well being

Summary

• Transition is an individualized process • Up to practitioners to drive that process • Combination of knowledge, support, and patient autonomy • “It’s a stage, not an age” • The work doesn’t end with transition

References

Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American psychologist, 55(5), 469. Arnett, J. J. (2007). Emerging adulthood: What is it, and what is it good for?. Child development perspectives, 1(2), 68-73. Foster, B. J. (2015). Heightened graft failure risk during emerging adulthood and transition to adult care. Pediatric Nephrology, 30(4), 567-576. Foster, B. J., Dahhou, M., Zhang, X., Platt, R. W., Samuel, S. M., & Hanley, J. A. (2011). Association between age and graft failure rates in young kidney transplant recipients. Transplantation, 92(11), 1237-1243. Keniston, K. (1971). Youth and dissent: The rise of a new opposition. New York: Harcourt. Kennedy, A., Sloman, F., Douglass, J. A., & Sawyer, S. M. (2007). Young people with chronic illness: the approach to transition. Internal medicine journal, 37(8), 555-560. Levinson, D. J. (1978). The seasons of a man's life. Random House Digital, Inc.. McDonagh, J. E. (2006). Growing up ready for emerging adulthood. An evidence base for professionals involved in transitional care for young people with chronic illness and/or disabilities. Parsons, T. (1942). Age and sex in the social structure of the United States. American sociological review, 604-616. Patterson, A. V. (2012). Emerging Adulthood As A Unique Stage In Erikson's Psychosocial Development Theory: Incarnation V. Impudence. Van Arendonk, K. J., James, N. T., Boyarsky, B. J., Garonzik-Wang, J. M., Orandi, B. J., Magee, J. C., ... & Segev, D. L. (2013). Age at graft loss after pediatric kidney transplantation: exploring the high-risk age window. Clinical Journal of the American Society of Nephrology, CJN-10311012.