4.0 Article

Measuring the Impact of an Adolescent and Young Adult Program on Addressing Patient Care Needs

Journal

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY
Volume 7, Issue 5, Pages 612-617

Publisher

MARY ANN LIEBERT, INC
DOI: 10.1089/jayao.2018.0015

Keywords

program evaluation; information needs; patient satisfaction

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Purpose: We aimed to evaluate the effectiveness of an adult-based adolescent and young adult (AYA) cancer program by assessing patient satisfaction and whether programming offers added incremental benefit beyond primary oncology providers (POP) to address their needs. Methods: A modified validated survey was used to ask two questions: (1) rate on a 10-point Likert scale their level of satisfaction with the information provided to them by their POP and (2) did the AYA consult provide added value on top of their POP. Young people at PM were recruited over two separate time points spaced 1 year apart. Descriptive statistics was used to report demographics and survey responses. Differences in demographics between cohorts 1 and 2 were compared using Student's t-tests. Results: Participants were an average of 31 years (range 15-39) of age; (Cohort 1 = 137; Cohort 2 = 130) and were dominated by diagnoses of leukemia, lymphoma, and breast cancer. More patients had a consultation with the AYA program in 2016 (Cohort 2 = 55/130, 42%) compared to 2015 (Cohort 1 = 34/137, 25%, p = 0.026). Mean satisfaction scores (+/- SD) with information provided by POP in AYA domains in both cohorts combined were highest among (1) cancer information (8.09 +/- 2.22), (2) social supports (7.45 +/- 2.52), and (3) school/work (7.42 +/- 2.88). When evaluating the incremental benefit of the AYA-dedicated team, statistically significant added value was perceived in 5/10 domains, including school/work (p < 0.001), social supports (p < 0.001), physical appearance (p = 0.009), sexual health (p = 0.01), and fertility (p < 0.001). Conclusions: Participants were satisfied with the information provided by their POP and still declared incremental added benefit of the AYA program. Cancer centers should continue to advocate for AYA focused programming with ongoing evaluation.

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