Empowering Adolescents and Young Adults to Support, Lead, and Thrive: Development and Validation of an AYA Oncology Child Life Program

Abstract

PurposeThe majority of cancer treatment programs do not focus on the unique psychosocial support needs of adolescent and young adult (AYA) patients. Recognizing this disparity, a freestanding children's hospital utilized an interdisciplinary approach to bridge the gap and develop a comprehensive program to address issues specific to new diagnosis, treatment, and survivorship in AYA oncology patients. Methods and interventionsA pediatric hospital formed a multidisciplinary team to educate, engage, and empower AYAs to participate in the development of a comprehensive program. ResultsThe program enables peer-supported social networking and empowers patients to invest in their treatment and survivorship. The number of newly diagnosed adolescent patients accessing our program has increased 40% since the program began in 2015; attendees at AYA events increased from 99 in 2015 to 1312 in 2018, as has the number of AYA events per year. Following program implementation, our NRC Picker score of 89.3% ranks above the 90th percentile of all children's hospitals (benchmark 81.2%) on questions related to “involving teens in their care”. ConclusionsAYA Programs can provide age-specific spaces, empowerment events, and specific education curriculum that meet the unique needs of adolescents and young adults and may positively impact patient satisfaction.