Educational program improves cancer survivorship understanding in multidisciplinary teams, highlighting the role of lived experience experts.
530 Background: Annually, more than 95,000 children, adolescents, and young adults receive a cancer diagnosis before the age of 40 in the United States. While 85% survive at least five years, this growing population faces a range of long-term complications from both the disease and its treatment. Survivorship care remains inconsistent, and many health care professionals lack training to address the complex needs of this population. To advance quality cancer care and close this gap, the American Cancer Society (ACS) developed an ECHO program to educate multidisciplinary teams about the distinct needs of pediatric, adolescent, and young adult (PAYA) cancer survivors and to support implementation of best practices. A core innovation of this ECHO was the integration of lived experience experts (LEEs) to elevate patient perspectives, enhance provider learning, and drive improved patient-centered care. Methods: Project ECHO (Extension for Community Healthcare Outcomes) is a learning framework where participants engage in a virtual community with peers and experts through didactic and case-based presentations. This fosters an “all teach, all learn” approach to disseminate and implement best practices. Project ECHO is widely recognized as a scalable approach to improve high quality, cost-effective care. Over 12 months, we held monthly one-hour interactive sessions on-line that focused on topics such as models of survivorship care, late effects, psychosocial needs, financial toxicity, fertility impacts, genetic counseling, and exercise and nutrition. A total of 220 unique participants across 36 U.S. states, one federal district, and five countries participated in the program. The heart of the ECHO Model is case-based learning. Traditionally, cases focus on system- or patient-level challenges. The ACS PAYA Survivorship ECHO was one of the first oncology ECHOs to feature LEEs as the case presentation in each session. Our 11 LEEs ranged from 3 to 36 in age at diagnosis, and the time from diagnosis was over 40 years from diagnosis. This approach brought patient and survivor voices directly into the clinical learning environment and emphasized the importance of integrating lived experiences. Results: The inclusion of LEEs deepened the emotional and educational impact of the sessions, encouraged clinicians to reflect on gaps in care, and fostered stronger connections to the survivor experience. On average 82% of participants reported learning something new from the LEE cases. One participant shared, “I loved hearing about experiences of others. It helps to understand how to address their needs and better understand their experiences.” Conclusions: By embedding patient and survivor voices into a scalable education model, this ECHO demonstrates a replicable strategy for advancing quality, patient-centered survivorship care.
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Rosen et al. (2025) studied this question.
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