Background and Significance

Over 90% of children with special health care needs are surviving to adulthood and must transition from a pediatric to an adult model of care in order to receive optimal health care. Health care transition (HCT) is defined as the dynamic, active process of attending to the medical, psychosocial, and educational/vocational needs of AYA as they move from pediatric to adult care. Approximately 500,000 AYA with special health care needs transition annually, but only 41% are successfully establishing care within an adult medical home.

Psychosocial Implications

Poor HCT planning and preparation, for all patients, can result in disruptions in health care, lower quality care, and adverse health consequences, including an increased risk of mortality for some AYA with special health care needs. Barriers to improving transition support include limited training and availability of adult providers with whom to arrange a smooth transition, the lack of tools for assessing patient and family readiness to transition, anxiety from patients, their families, and pediatric providers, and insurance/financial issues.

Evidence-based Assessment

It is important to assess several aspects of the AYA’s life in order to transition successfully. Specifically, the vast majority of transition readiness measures assess AYA’s knowledge and self-management skills. Other factors that are often assessed include the AYA’s readiness to transition, concern about transitioning, level of parental involvement, and self-advocacy skills.

Evidence-based Interventions

Few studies have been conducted which explicitly examine interventions to promote transition from pediatric to adult care. While some interventions have targeted the health care system, others have targeted transition readiness of patients and their families. Interventions targeting AYA’s have included promotion of self-management skills, providing psychoeducation, and use of technology for education and to provide treatment reminders. Other factors that have been targeted include use of a transition coordinator and having a specialized transition clinic.

Culture, Diversity, Demographic, and Developmental Factors Impacting Transition to Adult Care

AYA with special health care needs experience developmentally-normative transitions in puberty, sexuality, autonomy, personal identity, education, and vocational choice during adolescence, in addition to HCT, all of which can be affected by physical and/or mental disabilities, pain, medical setbacks, forced dependence, and perceived prognosis. Socio-demographic factors associated with an increased risk of poor HCT outcomes include non-Hispanic black or Hispanic race/ethnicity, lower income, non-English speaking, and the lack of a medical home.

Resources

• Gottransition.org
• https://www.thenationalalliance.org/
• https://hschealth.org/
• https://www.aacap.org/AACAP/Families_and_Youth/Resource_Centers/Moving_Into_Adulthood_Resource_Center/Moving_Into_Adulthood_Resource_Center.aspx
• https://medicalhomeinfo.aap.org/tools-resources/Documents/Shared%20Plan%20of%20Care2.pdf

Authors: Siddika Mulchan, Psy.D., Lila Pereira, Ph.D., & Jeannette Iskander, M.A.

Date of Last Update: February 22, 2019

References

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